Charlie's Up To

You must have so much patience!

2012-02-04T16:54:00.000-08:00

I don't think it the uncommon parent of a child with a disability that hears the comment, "You must have so much patience." Or this, "Your child is so lucky to have you as parents." "God sent Charlie to the right family." And, "I just do not know how you manage... I don't think I ever could."

On a field trip with a home school group. He said, I learned how to hold a starfish!

First, thank you so much for the compliment. It is very kind and makes me feel good that there be some part of our lives that a person observes and thinks we are handling all this with grace and patience, and maybe even doing a good job. BUT...

I feel kind of weird about these comments and assumptions. You know, we are not angels by any stretch. We've no more or less capacity for patience than other parents. And mostly, when we began this journey, we were totally caught off guard. This is not what we expected or imagined, and when Charlie was diagnosed with Down Syndrome we knew not a thing about it. We didn't choose this any more than Charlie chose us.

You see, we are not specially equipped or specially chosen. If there is any reason beyond a random chromosomal anomoly in our becoming parents of a child with special needs, I believe it was that Ray and I needed this as a catalyst of increased dependence on Christ, and our eyes opened to an entire world of people who we did not have on our radar screens at all. If anyone was chosen for anything, God chose Charlie to teach us. He did not send Charlie to us so we would do a good job with him and take good care of him (though we are certainly charged to do so!). Is Charlie especially blessed by us being his parents (instead of, say, you)? Listen, if we can do it, anyone can. Jesus is at the pinnacle of our parenting journey, and if there is anything positive that we have done or are doing for Charlie, we credit it simply because we walk in total dependence on him.

So, to be honest, this post is inspired by a person I met the other day who told me after a short conversation that I am a saint for even wanting more children, that they could never do it, and I must have super patience, and good for me. The comment made me uncomfortable. Listen, if I have patience it is because I have been on my knees pleading for it, and have been made through my life's circumstance, sometimes in tears, to practice it. We are all called to care for those whose circumstances are meek. How blessed am I to have that lesson living in my care daily for six years, and maybe for the rest of my life if he outlives me. But I'm no super-human folks.

Anyone can parent a child with special needs or be a champion for a child with special needs. Any child can be a friend of another child with special needs. No special credentials needed. Just prayers and commitment. And if you think it will be a blessing for the recipient of that care, well, you are probably right, but you will be blown away at the ways that you are changed, utterly and tenderly, in the process.

Imagination and Down Syndrome

2012-01-18T15:34:00.000-08:00

I have heard parents share that they have been told that children with Down Syndrome are unable to imagine, as if it is general knowledge that children with Down Syndrome do not advance enough cognitively to gain that ability. And I gotta say... When I watch Charlie play this sometimes sneaks into my awareness... that someone should think him incapable of imagination... preposterous!

Charlie is "the imaginative one" of our two boys old enough to play this way. Here he is playing with "Mo" who he has since renamed "Me-Mo". Charlie will play for hours inventing games with a variety of pals he has around. His favorites these days are Buzz Lightyear, Mo, his dogs Little Jefe and Big Jefe, and Grover. They are a group of friends up to high adventure daily in this house.

Mo catching a ride on Little Jefe.

I remember when Charlie first began to do "imaginative play". It was a big milestone (especially given the 'rumors' it was impossible). It is true that some children will never advance enough cognitively to engage in this type of play. And that is okay. Most children with Down Syndrome are only mildly to moderately cognitively delayed, though I think there is the perception it is normal for it to be 'worse' than that. When asked I always tell people Charlie is just your run-of-the-mill kid with Down Syndrome. Pretty average in his capabilities... and yet SO capable! He imagines. He creates. He talks and jokes and understands and interacts. He has friendships and he can learn and he is caring and generous and helpful. He imagines!

After he caught me snapping photos of him imagining with Mo and Little Jefe, he wanted me to take a more formal portrait of him and Me-Mo. He posed himself and Mo very carefully. (If I had the software I would have photoshopped that laundry right out of this picture, but then that would not be an acurate portrail of our life!).

Taking Charlie's picture with Mo inspired Calvin to want to have his pic taken with his favorite toy... his race car track and race cars. Calvin is also very imaginative, but not in the same way or to the same extent as Charlie. First, Calvin pretends almost always using machinery as his characters, or in many cases if he is playing pretend he pretends he is repairing or operating machines. And when he is not imagining Monster Truck Rallies or Building Sites or Care Repair Shop, he is accomplishing tasks, completing challenges, and or forming a band with his brothers.

(Incidentally both of my boys favorite toys happen to be made by me... which makes me feel pretty rad. Yep. That's right.)

And then there is this little boy. Oh gosh. Look at those eyes! Miles favorite toy these days is whatever-brother-is-playing-with. He will imagine soon enough. I can hardly wait to find out what sort of games he will invent.

There's a whole lot of imagination in this house, Down Syndrome or not. I wish you could be here with me every day to see it. Definitely one of the coolest parts of my day as a mom.

My Charlie

2012-01-08T19:24:00.000-08:00

My Charlie boy is 6 today.

Oh Charlie. I just can't help but look at you, so grown up, so clever, and so, so special to me, and remember that first day. You were the smallest, most beautiful person I had ever seen.

You are our first. The boy who made us parents. Our first.

Gosh Chars, I just can't believe how the time has flown right by us. Now you are six. And you are so wonderful.

You are our imaginative boy. Always toting around your 'pals', making up games, having adventures.

You are talking so well and so much. I love to hear what is on your mind. Your thoughts are precious to me.

Charlie, what will the year ahead hold? There is so much ahead of us. And grand adventure. I am BLESSED to be your mama. Just as you are. Always. You are WONDERFUL.

Happy Birthday Big Boy. You're SIX!

Love,

"Kimma"

Oh Conky-conk!

2012-01-05T19:14:00.000-08:00

Our bright shining ~~baby~~ toddler Miles, aka, Conky-conk.

We all just love this boy so much. Notice the red bonk on his nose, blood crusted nostril, and wiley hair. We don't call him Conky-conk for nothing!

Resolve

2012-01-02T15:07:00.000-08:00

Hey, it's been a pretty good year so far. We began it right playing Domino's with friends into the first hours of the year. Made a fun visit to Grandpa and Grandma's church Sunday morning. An impromptu bagel fest at our house afterward. And the fun surprise of Ray only having to work half a day today (now, what should we do?).

Do you have goals for 2012? We do. We don't usually make a point of it, but after kind of a crazy last few years we decided to sit down and decide what our goals are for our family.

Number one goal is trust God, and say 'yes' to His call.

Number two goal is focus on our kids, and allow God to cause them to be the blessing in our lives that we believe he intends for them to be ('cause sometimes it doesn't feel like a blessing, it just feels crazy!). We are so glad to have the space and time and a year wide open with possibility to make this happen. No... allow it to happen as we listen to God and say 'yes'.

The last goal is simple... try really hard to not get so behind on laundry and dishes. Honestly, I think we have a better shot at the first two goals than this one. Still, it would be nice to feel on top of these two pesky jobs.

And finally I will leave you with Calvin's two goals he made for himself:

1. In the new year I want to learn to play baseball with no tee, and...

2. When Miles turns 2 I want to teach him to look with just one eye like this...

...

Happy New Year Friends!

Christmas Wishes

2011-12-24T22:49:00.000-08:00

As Charlie likes to say....

Happy Chwimas Everyone!

From our family to yours this Christmas Eve and Day, we hope yours is filled with much peace and delight and family and wonder.

We remember, and indeed celebrate with much joy, the birth of our savior Jesus today.

Love and warm wishes,

Ray, Kim, Charlie, Calvin, and Miles.

Yes it's time for more Calvinisms...

2011-12-19T12:05:00.000-08:00

I haven't posted any Calvinisms in a while. I post these pretty regularly on Facebook, and try to get them up here to share with the folks not on Facebook. As Calvin would say, "So... here they are!"

I overheard Calvin remark "Oh a spider." I look over to see him cheerfully watch a spider crawl the length of this arm. Disturbed by this site, I rush over--calmly--and say, " let me get that for you" as I brush the spider away. Calvin gives me a quizical look, so I explain that spiders are really neat to watch, but we don't want them crawling on our skin. Calvin's response: "Oh... Why? Do they have dirty feet?"

From the back seat on the way to Charlie's school:
Calvin: Charlie, I would like to go to school with you, but I just can't. I don't have Down Syndrome like you do, Charlie. So that's why.
Charlie: Oh.... I see.

At the Dick Taylor Chocolate Factory with Nana and Papa:
Calvin: I like Madagascar Chocolate. What region do you like your chocolate from, Nana?

At bed time, after reading the story of creation:
Daddy: Can you boys think of some ways we can help keep God's world beautiful?
Calvin: More hugs!

Calvin comes up with the funnest names for things when he plays:
One day he was pretending to care for baby mice. He named them Joop, Cheese, and Zecharaymond.

Sometimes Calvin like to pretend to own a workshop. I'm honestly not sure what they work on there, but when this is the case Calvin becomes Donny-belle, Charlie is a name that I cannot even begin to figure out how to spell out, and Miles is Konky-Konk. Actually, Konky-Konk seems so appropriate for Miles at this just-learning-to-walk stage, that we refer to him as Konky-Konk often.

Just yesterday Calvin opened up a tire repair shop in the livingroom. He calls it "Casa-Billy Tire Shop."

Calvin playing cars: Jail is very, very jail-y, and you don't want to go there! So, be nice, Mater!

Calvin asked me a question. I answered as best I could, and must have done well, because Calvin proceeded to tell me that I "smashed that one on the head."

Calvin: Mom, when I turn 5 and get Down Syndrome like Charlie, may I go to his school?

And last, but not least, a Charlie-ism from our big boy who is talking more and more these days:
Mommy: Charlie, what was your favorite part of the day?
Charlie: My dragon!
Mommy: Did you have any disappointments?
Charlie: Um... I love cupcakes!

The IEP

2011-12-12T15:28:00.000-08:00

I like to post about Charlie's IEP's for a couple reasons(that's Individual Education Plan, for the folks who are scratching their heads. It's a special education thing, as you shall presently find out.): One is it helps me to look back and remember all his milestones without having to raid my file cabinet. And two, it sure is helpful to read about others experiences with IEP's and special education on the web when you feel like you're flying by the seat of your pants with all this stuff. Well, I am definitely flying by the seat of my pants, but none-the-less, here is our experience, and the tale of a family trying to figure out... dun, dun, dun... Kindergarten Placement.

The IEP was actually back in November. It was our first Triennial Review. Every three years children who are receiving special education services have to have a big review with a battery of tests to basically re-qualify them for services. The test results were kind of stage one of our IEP meeting. In a nutshell--Charlie is very, very slow academically (still learning colors, letters, numbers, counting, etc. at almost age 6), he is about age 3 or 4 for language comprehension, about age 2 for expressive language, with some additional speech issues to sort through in regard to intelligibility. He is about age 3 with fine motor skills, and about half his age with other developmental skills. He far excels in social skills, and was particularly complimented on his compassion for other students, and ability to think of others needs. This area was rated to be about age 5 or higher. He is healthy. His vision is perfect. Hearing is perfect. He is the star student in P.E. He is good natured, compliant most of the time, though starting to participate in some "age appropriate" mischief with his buddies (which is secretly pleasing, as it shows developmental appropriateness). All in all, he is about half his age in development. In some areas a little more, some less. It places him in the category of Intellectually Disabled (as opposed to a more mild assessment of Developmentally Delayed). Because of the multifaceted nature of his disability (it includes all areas of his development), his disability is considered Sever. Beyond these results and labels, it was noted that Charlie "has all the pieces in place" for his development to unfold in a more or less normal way--just a lot more slowly. This is a big deal for him. There are no big behavior issues, nothing that is just not coming along at all. He is quite delayed, but moving forward in more a less a "normal" fashion, if we were all to take two years to move forward one year in development.

This, to me, is a stellar report. Really. And we are very proud of him. Beyond that, we are excited for the years to come as all this developing and learning emerges.

The second part of the meeting was spent setting academic, speech, OT, social, and self care goals for the next year. Stuff like, "Charlie will learn to cut a thick piece of paper, staying within the lines of a half inch defined area, with little to no assistance, using regular scissors, four out of five trials." These goals crack me up, because they have to be written in a way that they can later me measured. What if we wrote our own goals for our children like this... "Calvin will void in the toilet, standing up, keeping the urine within half in of the toilet seat edge, four out of five times." Really. It's just kind of amusing to me. Anyway...

The last part of the meeting was spent discussing Kindergarten placements. So...

Everyone agreed that even though Charlie could stay in his current preschool level class for another year, he is just beyond it. Academically Charlie is not catching on very quickly. He can recite the ABC's, and can identify some letters. He can read his name. He can count, but does not know what it means. He knows the color blue, and sometimes others. He is finally picking up shapes. But all these things we've been working on since before he started preschool at age 3. So it is just going slowly. (I'm fine with this, by the way. My feeling is Charlie will get it eventually. We just keep plugging along.) For this reason he needs a class that is able to accommodate this slow rate of learning, and his need for a hands on approach.

Socially Charlie is doing wonderfully. He is a compliant student who can follow directions. He understands most everything that is going on around him. For this reason he needs a class environment where there are "typical" children who will challenge him to further develop his social strengths, and his ability to be part of the greater non-disabled community.

The biggest issue with all this is the "perfect" public school environment with these two main needs are, well, non-existent.

At his current preschool class, which we are so happy with, there are no "typically developing" children. No chances to interact with children who could demonstrate "normal" behavior for children to emulate, or to demonstrate "normal" speech for children to hear and try out for themselves. We have been creative over the last three years to create our own "inclusion" for this reason. At first we had him half time in a normal Children's Center where he did wonderfully, though he was quite behind in skills. This year we have joined a homeschool field trip group and we are able to take him out of school (because we wrote it into his IEP ;) for field trips.

But this leaves next year as a big question mark. Our choices as of now:

Moderate-Severe classroom at a school that is very far away where there may or may not be a minimal chance of "inclusion" in a regular classroom. We may or may not be able to write into his IEP that he will continue to field trips with the homeschool group as kind of an "independent study inclusion".

Mild-Moderate classroom at a school closer to home where there would be lots of inclusion, but less of a supported environment for a very slow learner.

Homeschool with a Charter school that has all the therapies Charlie needs and a stipend for supplies and extracurricular activities. A supported education comes from one to one instruction from me (Mommy) and also weekly visits with a resource teacher. Inclusion is accomplished through being with his family for instruction time, on campus enrichment courses, continuing our field trips, and after school activities such as music lessons, or swimming clubs, etc, and the vast homeschool community.

Straight-up Homeschooling with no Charter, and a big question mark on where/how therapy could happen. Inclusion would be through the homeschool community and home education with his ever-so-typical brothers. Supported learning environment comes from his mom.

I am realizing this is really a two part (or many part) story, so I will stop here and visit our pros and cons list. Meantime, if you've experience with this kind of stuff, well, feel free to comment and tell me your opinions and share your stories or thoughts. We are sort of in "paralyzed about this huge decision, and praying tons, and waiting mode" at this point. But you'll hear more about all this next time.

Visual Schedules

2011-12-03T14:33:00.000-08:00

The coolest thing (okay, not the coolest thing, but a cool thing) about being the mother of a child with special needs is the community of support. Some of our best friends are parents who we've met because they are walking a similar path to ours. You should hear us "special needs moms" when we get together. We greet, we hug, we sit down and start talking... as fast as we can... without taking breaths... so we can enjoy to the max all the things we've needed to talk about with other moms who speak our language... who know our struggles... who appreciate our triumphs with an "insiders" perspective. It is so awesome.

Well... I was looking a while back for a visual schedule to put on the fridge. Something for Charlie that will help him to grasp our daily routine. He is a visual learner, as are many children who have Down Syndrome, and a visual schedule --like he has at school--helps with transitions in the day. It helps him take charge of himself and his own responsibilities when he knows what is going on. As part of Charlie's recent IEP (a post for another day) we included a goal to get Charlie going on following his visual schedule with less prompting from adults. Helping him learn to take care of himself.

Magnets are just the right size, and very sturdy.

So anyway, I had been looking for a schedule for home, finding all the usual utilitarian icons, when I came across the cutest, neatest visual schedule ever. The two sets available were not quite right for us, so I contacted the owner who was willing to make a custom order for us! We talked it over and decided this would be a great investment for Charlie, and also having other little guys in the house who cannot read, but can read pictures.

The pictures on these are so lovely, yet easy to "read".

The owner is a mom of a child with special needs who created this product to fill a need, and founded Visual Schedules: Promoting Structure, Independence, and Self Esteem. And the result is so beautiful. And functional. I am not a product promoting blogger, but I have to plug the invention and innovation of another special needs mom who just gets it. And what she has created is so special. You get to choose your child's gender, ethnicity, and place of worship, for a product that is unique, looks nice on your fridge, and is super functional for children who can benefit from having a visual schedule.

"Let's move that field trip up to 9am." The schedule comes with clocks, too!

And how is it working for us? Great! It especially helps after school when Charlie get's home and is tired and hungry and eager to play and has a tendency to just come unraveled. We go immediately to the fridge and see that "first it is potty time, then snack, then play." Meltdowns are so much less frequent when Charlie has a firm grasp on what is going on. The picture schedule is right there for him to reference when he forgets. No guessing. Nothing lost in translation.

The big reveal... He like it!

Calvin loves the schedule, too. We set out his schedule in the mornings, which in our custom order includes magnets for our homeschool subjects, so even though homeschool is a very loose term at this point in our house, we throw those up there and make sure we do some fun, educational projects together to accomplish that. On Charlie's homeschool days (guess I have a bit of updating to do), I find the schedule particularly useful to help him know the flow of the day, what is going on, and what we are doing and when.

"Time for snack, Mom!"

So, a little plug for another mom making a difference. Thanks for working with us, Joann. We appreciate it so much. And we are totally enjoying our schedule--and keeping on track when Miles isn't "rescheduling" us. ;)

www.VisualSchedules.com

Colorado

2011-12-01T14:30:00.000-08:00

Getting behind on blogging is like getting behind on the laundry. Eventually you have a huge pile, and no time to catch up.

I'm behind on both. But lets hope I can take a little bite out of each this week.

We went to Fort Collins area, CO for Thanksgiving week. It was an amazing trip out to visit Auntie Laurie and Uncle Tim on the lovely Golden Gaits Ranch.

It was more than just a trip, but a much needed respite.

And experience of a lifetime for the boys.

We spent many hours out on the ranch, doing "ranch chores" and hanging out with "the kids"--Tim and Laurie's horses, Breggo, Stridor, and Cody.

We flew on an airplane. That was a new experience with kids. Charlie is now two for two with airplane trips having some kind of bodily fluid disaster. We will spare you. We just will. Let's just say this go around we had extra clothing for him (his first trip on a plane at 18 months he rode home naked... oops). What we didn't have were spare jeans for Daddy. Next time.

We went up to Estes Park in the mountains, and to Rocky Mountain National Forest. Amazing. So inspiring. We were in the shadow of the Rockies all week when we were not in them.

Thank you, Laurie and Tim, for such a wonderful time. We needed that.

Happy Birthday to Miles Benjamin

2011-11-16T18:36:00.000-08:00

A year? Really? A whole year. Gosh, Miles, it's hard to believe.

Look how big and clever and wonderful you are!

You are a people person. You delight in connection, casting glances our way always wanting to know we are with you in your experience of... whatever your doing at the moment. A community kind of guy.

You love puzzles and toys that you can manipulate and figure out. I always wondered why we ever bothered giving toys to your brothers who would pass them up for exploring other items or things... until you. You love toys. You love to figure them out, never tiring of them, recreating how you play with them every time. Your favorite toy is a set of nesting cups which you work tirelessly to nest in the correct order, or stack until they tumble down. I love to watch you.

You can say "Mama". I love that. You can say "bye-bye" and wave. You are learning some signs as we casually teach them to you. "More" and "all done" so far. You understand so much, though. Today you understood me when I said, "Show brother your cup." I can hardly wait to see you come into your own this year. Connection is so important to you, and communication will only open up that world for you. I can tell already that it is satisfying to you to work out what's going on and be a part of it.

It was Uncle Russel's Birthday, too!

You love your brothers. I wish you could see your own face when you see them. You follow them all over the house, walking just like they do (even though crawling is still much faster). (You learned to walk last week.) You imitate them in play, and try as you might to join along. We even suspect you might be left handed like Charlie. They are wonderful role models for you, and love you so deeply.

What a year Miles! Happy Birthday sweet son. We love you so very much!

Before it becomes too awkward and too late...

2011-11-03T14:51:00.000-07:00

I need to get these photos up of Pumpkin Patch, and Harvest/Halloween activities.

You can be sure a blog slow down means a life traffic jam in this house. We've been rather busy on every front imaginable. Personally, I'm freakin' out on the inside. Luckily, these guys are super wonderful and have a way of keeping my mind on what I'm thankful for daily.

Mid October is Pumpkin Patch Time. I think every year we get a picture of Calvin atop the Hay Maze. It was a beautiful day.

Charlie was SO excited for the tractor ride out to the pumpkin field.

Is this an adorable family, or what? Thankful.

Uncle Russ and crew.

We went with the boys friends from Sunday School. These girls usually make it into Calvin's family portraits he draws. They are precious girls.

Here we are at Charlie's school for the Costume Parade on the 31st.

A dragon, a rockhopper penguin, and a koala-sheep-mouse type guy.

On to the Harvest Festival at Grandpa and Grandma's church. Grandma is dressed up as a "Train man", and Grandpa is just dressed up as himself. That's his REAL Conductor uniform! Wish the kids would look at the camera!

Everyone says this little one looks just like his Grandma Kathe. I think so too.

A post about this guy...

2011-10-24T15:31:00.000-07:00

This guy here is 11 months old.

Ya I know. I'm still scratching my head, wondering how this happened so fast.

In a month we will have his first birthday, complete with the customary cake-of-his-own. We will let him stuff himself silly with sugary frosting and all that sweetness. Though, really, he's not much of a sweets kinda guy. His favorite foods are the green ones. Kale and spinach... I know, right?

Last year at this time we were waiting on pins and needles for him to arrive. He was due November 5th, but it just seemed like he was ready. Like he was going to come any hour. We were so happy to make it to 37 weeks thinking he may come sooner than that.

And then we waited. And waited. We waited nearly two weeks past his due date.

Finally, on November 16th, Miles arrived in a storm of a labor. An event that was protected and scary, navigated and traumatic all wrapped in to one.

I hear of parents who receive a Down Syndrome diagnosis for their child after birth having a hard time in the days leading up to that child's first birthday. All the memories and the trauma threatening to be relived in some kind of visceral wash of emotion. We never had that because we did not receive Charlie's diagnosis until he was 2 months old. But I admit, I am having a taste of this as we approach Miles' birthday.

It's weird. We went to the pumpkin patch the other day (need to post those pictures!), and I was remembering last year... We went to the car wash on the way, sure a baby would be born any day and we would not get to it for a while... This year, on the hay ride out to the pumpkin field, I just could not help but feel so connected to that impatiently waiting version of me a year ago. My stomach has been all in knots over so many re-lived events just lately: harvest time, the world series, getting the kids costumes ready, the anniversary of my Grandma's 100ths birthday, and her passing a few days before it...

Or, the other day I took Miles to a nursery to hang out with other babies for a bit, and he freaked out, and I ran to rescue him of course. I feel so sure his intense separation anxiety is due to those first hours of his life when he was separated from his mama, crying, scared, cold, hungry, in pain.

Stuff like that.

The first time I ever held him was amazing. A last ditch attempt to calm him and see if he would start breathing better before packing him up for an ambulance ride to an NICU. He was placed in my arms, and I just tucked him inside my gown and nursed him. I don't know if I was holding and comforting him, or he was me. But we've truly been an inseparable, deeply bonded pair ever since.

And I always wonder... Was it that crazy birth we had that made it like this for us. My heart is so compassionate toward our little Miles. And he is so intent on being in my arms. Do I love him too much? Silly to ask, I know.

Anyway. This is a rambly and disjointed post about our Miles boy, because he is on my heart and my mind all month long in endearing, uncomfortable, lovely, and confusing ways. It feels like a birth month more than a birthday. There was so much anticipation, topped with the most biologically and emotionally intense experience of my life, and followed with the sweetest little fellow I ever did know. We'll end it November 16, with a big party for the little boy who we are so happy to have in our lives.

If your lunch time lacks excitement...

2011-10-11T14:06:00.000-07:00

You might try having your brother feed you.

Something green and gooey will help.

Brother will say it's Monster Slime...

And he will deliver it via Front Loader.

Make sure you laugh hysterically with every bite.

Mmmm. Spinach and Potatoes.

Tease him a little bit. Turn you head. Squeal.

Above all, enjoy the mess. Brothers allow for awesome messes.

So that's ONE in Diapers!!!

2011-09-28T22:26:00.000-07:00

I gotta say, I doubted the day would come, but...

CHARLIE GOT IT! He did it, and he's done with diapers! Well, in the day time, anyway.

I am so proud, and over the moon. It has been a looooong road (nearly 3 years of potty training!), but he was just ready, and he did it, practically overnight.

He started wearing underwear at school this Fall. He has a set schedule there, everything is predictable, and he learned when he could expect to go. He has been dry all day most every day at school.

Home was still another matter. We tried taking him at natural breaks in our home activities, but we just don't do the same exact schedule day after day here, so he just did not try to hold out for a potty opportunity.

Enter The Potty Watch. An ugly, silly little watch shaped like a toilet. It "sings" every 30, 60, or 90 minutes. The day I gave it to Charlie I put it on his wrist and told him, "When the watch sings it will be potty time," and I set it for the 30 minute interval.

Well, it sang, and Charlie danced his little self to the toilet to go. 30 minutes later it sang again, and again he went. 30 more minutes went by... you get the point. He's been dry, save for a random accident here or there, ever since. That was a week ago. We even went on a road trip over the weekend, and he stayed dry. He's going every 60 to 90 minutes now, no problem. He's wearing boxer briefs, and looking all slim without that bulky pull-up. He is so proud of himself. He knows he is Big Stuff now.

He's got a little ways to go, yet. He needs to learn to initiate his toileting himself. He has a lot of trouble managing his clothing, still. And then, there is night-time to conquer (seriously, how did any of us ever learn to wake up and use the bathroom at night?!). But we are getting there. We've got the biggest chunk of the puzzle down. Wow. It's party time!

His trendy little self.

2011-09-22T09:01:00.000-07:00

Oh my. This smiley boy is sooooo cute!

Look at him in his new amber teething necklace.

Daddy says it makes him look like a true Humboldt baby.

You know... all-natural, and stuff.

Wait. Is that the beginning of a dreadlock there on the side of his head?

Just kidding. (We don't want to push Daddy over the edge.)

Oh my goodness. He is just so sweet.

School Year

2011-09-15T16:23:00.000-07:00

Well, are we on week three or four of school? I can't even remember.

The first day of school came, we all woke up at the usual early hour, had breakfast, then mentioned to Charlie that the bus would come soon, so we needed to get him dressed. He complied happily. He did a few joyous dances about the bus coming. Kissed everyone soundly. Then bounded down the driveway with Daddy to board the bus to school.

Everything has gone equally as cheerful and 'old-hat' as ever.

There is a new Speech Therapist, and Charlie has not warmed up to her just yet, I hear. I doubt it will take him long. He has been coming out of his shell with so much more ease these days. A lot of the former anxieties seeming to have melted away. He is so mature all of a sudden.

There is a new playground at school. It sounds awesome, but I haven't made the drive to see it. School is like this whole other life my son has. He can't really tell me about it, so I only hear snatches of that life from his teacher in e-mails. It is sort of weird, and makes me sad that I am not there in it. It is his, and it exists away from us.

Charlie is wearing UNDERWEAR at school now. And doing awesome with it. It does not go nearly as awesome at home. At school the schedule changes seldom, and he knows exactly how long he needs to hold it. At home we don't have that rigid time-line of events, and despite taking him often, he rarely holds it if he needs to go in between potty breaks. He is getting better, but yesterday peed his pants 3 times in two hours. We're working on it. We are going to give him a watch with a timer to see if he will learn to hold it until his watch beeps, and then take himself. Like I said, he is so mature now, and it seems like potty independence, and so many other skills, are at the brink of his ability. He is so close.

This is Charlie's last year as a preschooler--a bonus year to shore up some basic skills (he's 5 1/2 now). It's sort of a big year. To me it feels Huge. We are facing big decisions about Charlie's education for next year. I feel lost in it all, and pretty stressed out about it. Yeah.

We found out the local class for moderate to sever disability that we considered is really not an option, unless we want him to be the only kindergartner in a class full of 10+ year olds sitting at desks doing academic work. No thanks. He's small for his age to begin with. And sit at a desk? Not likely. Not appropriate. Not fun. The only option for him in our town then, is a mild to moderate program. Everyone I speak to thinks he is probably just at the brink of moderate... just might be a good fit. Otherwise our options are the school he is at now, or one even further away. (His current school is 30 minutes away one way.)

I had hoped so much to bring Charlie to school closer to home. He is gone too long, too far, and too disconnected for me to do this for the long haul. So we are praying. We are investigating every avenue including homeschool, independent study, and moving to be near the schools in Eureka. Of course if the mild/moderate program is a fit, then none of this worry will really matter. There are other considerations besides those listed, though. It just feels like a mountain. We are trusting God with this, always in prayer about it. But I'll be honest, in all the patience I've learned as direct result of parenting this beautiful Charlie-boy, this is one situation where I just have a hard time being still. I want this decision to move forward. I want to know what is ahead. And at the very least, I wish everything seemed less murky and more promising in my heart.

The good news is Charlie is oblivious to all of this. He is enjoying himself so much, a cherished part of his school community, a bright boy who loves to learn and please others and make friends. I always wanted more inclusion for him, and yet seeing him thrive at his school where he has friends--true friends--who are at his level, makes me wonder if we should move him... or what we should do. I wish these decisions could be made for us... Like God would simply cross out all poor options in some divine fashion. I think, though, that we are going to face some tough choices, and we will need to put blinders to all factors, pressures, and desires of others or our former selves, and look at our son and family and make the best decision for us all as a unit--a family community. Afterall, Charlie could be with us his whole life long. We need to do what is best for us all. I wonder what that will be.

Anyway, to be continued I guess. Things are good. Especially for our special boy. He is doing fantastic... and loving his wonderful life. And we are, too.

So much to say...

2011-09-14T14:35:00.000-07:00

about these guys:

But mostly, this guy:

And a little bit about this one, here:

We've been in the midst of school getting started, and many other things afoot that just keep mommy swimming in head space, and not so much at the keyboard.

With so much to share, so much going on, so much growing and learning and changing, I hope to get some writing time the next few days... so stay tuned.

He says to me..

2011-09-01T15:26:00.000-07:00

This afternoon I picked up a hanger that was in a pile of Calvin's things, and he says,

"Stop! That is my tool!"

"Oh, sorry. Here you go," I say.

"I need this to make my babies," he dutifully informs me.

Reminds me of Ray's smug answer he used to give when we were first married and friends would ask when we planned to have children. Ray used to say, "Just as soon as we learn how."

Of course, now people ask us when we will stop, so we say, "Just as soon as we figure out why it keeps happening."

Well, according to Calvin there are tools involved. Next he tells me, "I'm making baby girls, here."

Okay, you have my attention.

We apparently have a lot to learn about making babies around here. Especially how to get a girl baby. Thankfully, Calvin is full of ideas and methods.

But before you think we Robinson's are ready for another baby around the house, Calvin's finished this bit of education by pointing to Miles and saying, "I'm just going to get rid of this guy here, and make a baby girl for us, and name her Beeber."

Well, let's not get ahead of ourselves. And lets maybe leave the name choosing to Mom and Dad, shall we?

Discovering

2011-08-25T16:40:00.000-07:00

We have good friends who have a daughter with Down Syndrome one year younger than Charlie. We joke that we are 'all messed up' about knowing when children are 'supposed' to reach developmental milestones.

Charlie was our first, so we just learned to take development as it came, as labored as it was at times. It still feels like a surprise, a special bonus gift, every time he takes a developmental leap. It's an awesome feeling, the pride. He has become so clever and brilliant.

And then there was Calvin, who even now seems a little genius to me. So really, he's very normal developmentally, but it just amazes me the way learning occurs. So effortless. It's as if he was created to be a learner.

And now Miles. Our sweet baby boy exploring and learning as quickly as he can. I will never tire of watching my children figure things out. Invent their little games. He discovered that he likes to 'put things in'. (I hope this means he will be tidy.)

Here he is searching out only pieces to our train set, and filling the laundry basket bit by bit. Calvin did not find the entertainment in this as I sat on the playroom floor with the camera. Charlie cheered. I could watch for hours. These three amazing fella's of mine.

What it's worth

2011-08-14T15:04:00.000-07:00

They have a saying up here in Humboldt, "The Bay is the Pay". In other words, in a setting like this, way up here in beautiful, rural Humboldt County, many of us forfeit higher salaries in exchange for staying in the area, enjoying the richness that all the natural creation affords us.

Our little family has even more riches than the bay, the redwoods, the river, the coastline. We have our family. Last weekend we gladly got to go to one of the boys favorite Humboldt spots, to see some of their favorite people, Uncle Ryan and Aunt Kassi at their cattle Ranch in the mountains just east of where we live. Oh, it was beautiful.

We held puppies, saw some cows, watched horses whinny and kick about. We jumped on the trampoline, tried the hammock, enjoyed ribs cooked on an open fire, ate apples straight from the tree, and celebrated Kassi's birthday.

These are the moments that I covet the most. Friends, family, the sight of the smaller kids plotting along like little ducks in a row after the bigger kids. Everyone having so much fun, forgetting our cares, enjoying the beautiful, beautiful natural beauty of this place we call home.

Only thoughts

2011-08-07T23:14:00.000-07:00

It's been a beautiful summer. A slow summer for the blog. Just busy, I guess. Here a a few random thoughts on life around here. And some lovely memories from a recent trip to Moonstone Beach with our dear Clement friends.

Age five is WAY more becoming on Charlie than was age 4. Last summer had me pretty scared and discouraged to have him home for this summer, but he has been great. Mostly, his wining and meltdowns are now minimal, and his comprehension is increased so much that if he does misbehave he now understands "time-out" and will learn from his mistakes.

Summer is full of get-togethers. Barn dances. Band practice. Festivals. Family. Friends coming to visit. Despite the grass pollen that always makes me start to entertain thoughts of moving somewhere less, well, grassy, these moments of community anchor me to this area in a way that feels so... like home. It feels so good to feel like this place is "home". It's taken ten years, and I still miss my mountain home.

I'm working on a book. I guess it is a novel. It's funny, I always thought if I wrote a book it would be some piece of practical non-fiction. But after reading a friends lovely novel, The Eve Tree, I was not only amazed at her accomplishment and enthralled by her storytelling (and the fact that I know her--she's a real person with children... and she wrote a novel), I began to think of the benefits of a novel. The ability to discuss things important, or to face places of fear, all within the beauty of a story. It seems a more realistic, personal way to impart wisdom to others (wisdom. Oh dear.). Well, whatever it is, I'm realizing this could take me years to finish at the rate I'm going. And I wonder if I really will.

Miles is big. He is so sweet and smiley and "talks" in the funniest high pitch squeals. He can say "Dada" and I swear I thought I heard him say "ball" but it could have been coincidence.

I have several old dresses, pants, and shirts I am recreating into new versions of themselves. One reason is nursing a baby is kinda hard to do in a dress, so there are some dresses that have not been worn since Charlie was born (because I have literally been breastfeeding for that long straight--do the math). But also, maybe I'm not the same level of "hippy" as I thought I was when I moved up here (well, except for the marathon breastfeeding). Somehow a patchwork skirt is a little less of a statement than an entire patchy dress. Well, I hope I don't screw them up. I'm kinda winging it here with this sewing business.

It's my birthday in a month. I'll be thirty one. I am still waiting to feel like I have "arrived" in my adult life. After marriage, a college degree, three children, and now the big three-one, I am really beginning to wonder what event will finally bring this feeling.

He just can't help himself...

2011-07-19T09:52:00.000-07:00

Some recent Calvinisms from our Middlest son:

Mr. Brown Eyes.

(Reading the Book "Abuelo and the Three Bears" with Auntie Renee, in which Papa bear is feeling grumpy about his frijoles being too hot.)

Aunt Renee: Papa bear is feeling Grumpy. Do you think your Papa ever feels grumpy?
Calvin: Yep. Sometimes.
Aunt Renee: What about you? Do you ever feel grumpy?
Calvin: Yep. Every day!

His little art studio in the garage. He specializes in "vehicles".

Calvin: Are you a girl?
Mommy: Yes.
Calvin: Are you a wife girl?
Mommy: Yes, I am.
Calvin: All mixed up?
Mommy: Probably so.

Mom, quick! Bring the camera! I made a really long train!

Calvin, examining the picture on the Caesar Salad Dressing label, declared the girl on the label (Caesar) had spinach in her hair (a laurel crown). Using his 3 year old skills of deduction, he then told us he had figured out what the writting on the label said:

"It says, 'We don't put spinach in our hair, we put it in our mouth. This is the truth!'"

He wants to be a train engineer when he grows up.

Calvin is at his first ever Vacation Bible School today. I dropped him off this morning at Calvary Chapel, and he is so excited. Anxiety about doing a new thing? Nope. Not if there are friends to be made, crafts to be done, huge tunnels meant to imitate the belly of a whale to be explored. He's the full package, that Calvin. Outgoing, sensitive, witty, decisive, industrious. We call him our "Middlest", because plain old Middle just does not do him justice.

The projects he sets before him.

2011-07-14T08:42:00.000-07:00

Charlie is a boy ever at task.

Yesterday I walked into the kitchen to find him here:

And what was he doing? Cleaning I think. He was very proud. (And really, it did need reorganizing anyway.)

Dear 'Help, so scared of raising Down Syndrome baby',

2011-07-08T19:21:00.000-07:00

Welcome to the blog. As you click around this blog you will notice that I publish stories that are happy "you can do this" kinds of stuff. Sometimes I publish "how am I doing this, this is so hard" stuff, too. A lot of it is just "life is normal" stuff. But I will tell you something that I was thinking about today, since you Googled and found yourself here:

This journey, the Down Syndrome part, it can be hard. An adjustment. It is admittedly inconvenient to have a 5 year old, 40 pound boy, who is pulling 2 year old stunts around the house. But here's the thing: there is an element to this, hmm, 'Down Syndrome lifestyle' that just feels so, I don't know... lucky.

The word Delight comes to mind.

He's stunning.

When I meet a new parent who has recently welcomed (and there are shades of 'welcome') a baby with Down Syndrome into their life, joy just starts spilling from my insides. If I can manage to keep the silly grin under control, there is still the sparkle in my eye.

You see, it's okay that it is hard right now and that you don't know what to do. I know how it hurts in your heart and every few moments your thoughts are injected with the words "Down Syndrome", and that leaves you feeling very small in the face of something that seems so big. I know you probably feel a lot of guilt for thinking things like "I don't want a baby like this". It's fine to feel all that stuff, but...

There is more to this journey than what you feel right now.

So, let me break some of this down for you, because I know from where you sit you just can't yet know what is ahead: Impossibles will become possibles. Things will surface as a part of Down Syndrome that you never thought of, but you will decide you like (oh the smiles! the joy! the softness. the spunk! the slow and steady development.). Your knowledge for special needs, and indeed special acronyms (oh the acronyms!), will grow, and it will blow you away that your life ever existed without this knowledge, this wonderful community, this inspiring child. Your ability to adapt to this life will astound you.

Some day you will sit back as you watch your son or daughter play imaginatively (after having wondered in the beginning if "imagination" was possible) and just think "Wow, I have a kid with Down Syndrome". This thought will be followed with "I must be really lucky".

Or, how about this one: Deeply, Undeservedly Blessed.

So, parent who Googled "Help, so scared of raising a Down Syndrome Baby", if you can read this letter through your anxiety and the place of fear you are in right now, try to hold on to just this one thread of hope from a mom who has been there:

You can do this. You are not alone.

As much as we pour into him, he shores us up as people and a family.

When you hold your baby in your arms, stop and feel how soft her body feels. How she melts and molds her body into the curve of your arm. Totally, completely relaxed. You will not hold another baby who will rest in your arms and unfold into your care like that. So it might be the low muscle tone, but consider this:

When she rests in your arms so fully, so unfurled and vulnerable, think about a Parent who absolutely offers the same to you. Whose forethought it was to give you a gift so precious, though you never thought to ask for it. Whose intention is to lend His full strength to you as you figure this out day by day (you don't have to have it all figured out now!).

Joshua 1:9 "Have I not commanded you? Be strong and courageous. Don not be afraid. Do not be discouraged. For the Lord your God will be with you wherever you go."

That's a promise. My secret. How I get by. How I thrive as a parent and a person. Dependence in Jesus. Ya. That's basically it at the bones. And one foot in front of the other. And Charlie cuddles by the dozens.

Listen, I'm doing the parent thing times three. It's just not easy any way you slice it. Not with special needs, not with typical development, not with an early talker or a late one, not even with an easy sleeper (though I swore that would be the answer to all our problems the first two babyhoods we ~~endured~~, uh, experienced).

Simple, life is not. Good, it absolutely is. Please take heart. E-mail if I may pray for you. I'm always up for that. Really.

Sincerely,

Mom whose imaginative 5 year old son with Down Syndrome astounds and delights her daily.

We've Got a Creeper...

2011-06-26T21:54:00.000-07:00

A creeping little crawler.

Better look out, friends

Miles Benjamin is on the move!

The people who write baby sleep books...

2011-06-25T22:05:00.000-07:00

...must have all had babies just like Miles.

Babies who just roll with it, and after sleeping between mommy and daddy for 7 months, think sleeping in his own bed is good enough for him.

Good enough not to fuss. Good enough not to lay in bed awake. Good enough to drift swiftly, quietly, and soundly to sleep. On his own. Just like the "the books" say is possible.

I always say Miles is the kind of baby that convinces parents to have a multitude of babies. (We are not tricked by his ease and mellow nature, however. We've got our spunky Calvin to remind us some babies are born with a strong opinion on everything.)

Hey, after Charlie and Calvin, who ~~nearly did me in~~ were a tough sell (and still are!) over bed time, do I dare say we 'deserved' an easy sleeper in Miles.

I'm knocking on wood.

And I'm getting more rest.

Two Steps Forward

2011-06-19T09:18:00.000-07:00

The first week of Summer vacation has come and gone. We spent the entire thing quite ill. Well, I spent it ill, as did Charlie. At this writing, Calvin and Miles have also come down with fevers. Only Ray has been spared this week, though I think he might like to have a turn so he can have a break from waiting on everyone else.

(Happy Fathers Day, by the way Ray. You totally rock our world, and have proved it many times over these past few weeks of illness, moving, helping out family, and doing everything else you do without complaint. He is awesome everybody. He really is.)

Despite the crazy virus sweeping through, which I am calling "the crazy-bad pink-eye flu", the first week of summer vacation went very well.

Charlie plays by himself very well now, and has a fantastic imagination.

I was not expecting "well". I'll be honest. Sometimes weeks off from school can be really hard. Charlie can be difficult to parent, and five whole days of Charlie can add up to a lot of overwhelm for me and the brothers.

But things are different this time. We have our lovely, larger-than-tiny home now. There is space for the kids to spread out a bit from each other. And with all the different rooms and two levels and nooks and crannies (really, our new house has nooks and crannies that I LOVE), even on a day where the pollen is so bad outside that I just cannot get out we can move from bedroom to loft to playroom to kitchen, and at the end of it we feel as if we actually got out and did something. Our scenery changed. We feel sane.

We play trains a lot.

But it is not all house. Charlie deserves credit for much of how sane and smooth the week went by. He has come a long way since last Summer.

He is better able to entertain himself in non-destructive to the house and brother kind of ways. He is less likely to run off or actively try to escape from places (like the house or yard). Still not trusting him completely, but it is not incessant. He is better able to understand instruction, and more likely to comply. He understands the difference between mom's regular voice, and mom's serious you-better-think-about-obeying-me voice.

This guy has been busy figuring out how to crawl. Almost there!

Really my worst complaint for Charlie lately is his attitude. Sounds so typical, right? It is! We work a lot lately on using a normal voice instead of whining. I say a lot "Charlie, if you whine then you will have time out." His reply? "Okay, I happy!"

Sometimes it takes comparing one year to the next to realize ~~we have made~~ he has made progress. But that is okay. Progress is being made! It feels so good to discover this.

Two more weeks of summer break until summer school begins. I'm looking forward to it.

Pressing On

2011-06-11T10:25:00.000-07:00

"...I press on to take hold of that for which Christ Jesus took hold of me. Brothers and sisters, I do not consider myself yet to have taken hold of it. But one thing I do: Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus."

Philippians 3:12b-14

This morning the boys and I took a few minutes to watch some family videos on the computer. One of my favorites is a short little video of Calvin holding Miles in the hospital for the first time. In the clip Calvin notices different things about his new brother. He comments that Miles is "neat", he tickles his toes, he pokes his cheeks. My favorite moment, though, is one where newly made big brother Calvin puts his little hand over the blankets, cradles Miles head in his arm, and says "I got'cha."

I got'cha.

Memorial Day weekend we spent at Great Grandma Chalmers house. It was not our usual visit with everything in place as we've always known it. Cinnamon toast in the mornings, cookies at tea time, a game of cards before bed. Every piece of furniture in it's place. Do you want the green and yellow guest room, or the brown?

This weekend was different. We were involved in moving the furniture, selling it, selling everything not taken by one of the family or for Grandma's new apartment. It was a weird feeling, least of all for us, to pack up everything from Torrey Pines Drive and move it to the driveway for a major two day garage sale. It felt like the end of an era. Like things will never be the same.

It felt like the time my parents sold our family home, furniture and all, and retired to a different state. If there was any doubt childhood was over, that event drew the line in the sand. Home is not 'a place' any longer. It's a community.

Listen. I know it is just 'stuff'--and Grandma knows it, too. But oh the memories that are built around the stuff. The home in which for 24 years was a center point for our extended family to meet. "If the walls could talk," they say.

We were happy to visit Grandma Phyllis. She is settling in to an apartment where she is able to have people around to help, meals cooked, her space cleaned. All helpful and needed when you are 86.

It was good to see her, to talk with her, bring the boys. I know it was a difficult weekend for her. It has been a difficult process to finally decide it's time to let go of the house. I always say my plan is to pass from this life peacefully in the night the same hour as Raymond, when we are both very old. I wish it could happen that way. I can't imagine being on my own for the first time in my 80's. Grandpa made it possible to keep up the house on Torry Pines Drive. Without him, it's just too big of a job. As Grandma said, "I miss him. He made the world go 'round."

Grandma told me when she and Grandpa were praying about buying a home in Auburn, they prayed for four specific things: A big living room for lots of company, a hostess' kitchen, a large bathroom, and a view of a sunset. "Well, we didn't get the sunset, but we knew the minute we walked into that house that it was the one for us," she told me.

It's hard to let it go.

But those who wait on the Lord shall renew their strength;

they shall mount up with wings like eagles;

they shall run and not be weary,

they shall walk and not faint.

Isaiah 40:31

Now, pieces of Torrey Pine House are scattered throughout Auburn, California and beyond. The Conn Organ that went to a 13 year old boy dressed in skater fashion, who begged his parents for the chance to have it. He writes his own music. Has taught himself to play. I don't know if that boy knows Jesus, but he took a box of organ music with him that included hymns my Grandma used to play from memory. The master bedroom set went to the neighbors who have helped Grandma out in so many ways these past few years. Boxes of books went to a new church in town. The craft supplies earmarked for children's Sunday school classes.

As for us, the clock Grandpa built now stands in my living room. Miles stops what he is doing and looks over at it quizzically every time it chimes. We brought home a couple old chests filled to the brim with memories. Some beautiful old depression glass dishes. A candy jar that Grandma tells me her mother kept filled with hard candies all the year round. Other odds and ends. May we be blessed to take the lessons we learned in hospitality from Torry Pines Drive and open our home and our lives in the same welcoming fashion.

And Grandma? Can you imagine beginning a new chapter of life at age 86? It seems that at that age things should just be settled in for the last haul. But Grandma is adjusting to a new home, a new routine, a new place. Even in her small apartment her gift of hospitality is felt in the careful way in which she decorated, her warm welcome and good conversation (the ice cream stash in the freezer). But I sense it has been hard. There has been so much loss and letting go. In many ways. So many ways about life that will just never be quite the same.

No more large living room full of guests. No more hostess' kitchen bubbling with delicious home cooking, fresh salads, the strawberries Grandpa used to grow. The large master bathroom now a very modest size.

But there is something. There is, finally, a sunset. A sunset over a field Grandma watches from her rocker every evening. An unmistakable I got'cha.

Be strong and of good courage...

for the Lord your God is with you wherever you go.

Joshua 1:9

You know, Grandpa Paul and Grandma Phyllis have been faithful ministers of the gospel their lives long. Grandma was involved in a wonderful effort to reach out to women with the Gospel, and traveled the country and the world with Enriched Living workshops. During those years Grandpa toted along the projectors and equipment in a support role for her. Richly gifted in hospitality, and dedicated to the uncomplicated love of Jesus, I can only think Grandma simply has more work for the gospel ahead of her. That sunset outside the window, it's a daily I got'cha. It's a grand finale. It's the last push.

You are the light of the world.

A city that is set on a hill cannot be hidden.

Matthew 5:14

We're Moving

2011-06-04T10:47:00.000-07:00

Oh, blog neglect!

We've been so busy. Last weekend we made the drive down to Great Grandma Chalmers home to help in a major moving and downsizing effort. I want to blog about that experience. I'm still thinking on it.

Also, we are moving. About 50 yards. A larger house. A fenced yard. And, I am assured, a gate to keep Charlie back from the busy street in the works. Internet services will be down for a bit, so more blog neglect is coming.

For now, I want to leave you with a few sweet Calvinisms:

Charlie and Calvin sitting together at Great Grandma's organ:

Calvin: Charlie, it's an Organ. Say "Organ."

Charlie: Ohhhhgaaaannnn.

Calvin: Or-gan, Charlie. K-N-O-O-I. Organ!

Calvin helping "Papa Moose" inflate his new blow-up mattress:

Calvin: (Very excited about the mattress.) Papa Moose! Can I sleep on your new mattress tonight with you and your friend?

Papa Moose: Uh. I don't know if there will be room. By the way, who is my friend?

Calvin: Nana! (The rest of the weekend Nana was referred to as Papa's "Friend".)

Calvin snuggling on mama's lap feeling sulky:

Mommy: Calvin, what's the matter? You seem sad.

Calvin: I wish I was still the littlest.

Mommy: Oh, I see. Sometimes it's hard to be a big brother and not the baby.

Calvin: Ya, it is... There's babies all over this town!

The Pudge

2011-05-25T23:52:00.000-07:00

Miles had his 6 month check-up today. 22 pounds 8 oz, 27 3/4 inches long. Healthy baby boy, who is working out how to bounce his way across the living room on his bottom. And he's talking to us in these long, very detailed and punctuated sentences (well, as baby sounds go). A happy, silly, and curious baby.

This kid just astounds me. What a little joy he is.

Three sets of baby boy feet.

2011-05-21T19:57:00.000-07:00

After we had our first baby, there was just an assumption we would have another.

When the second was born, we naturally understood he would not be the last.

And now a third son. I don't profess to know God's will so far in advance, what He may place in our hearts for our family, just suffice it to say there is not that assumption that there will be more newborn babies for us.

So, maybe prematurely, but I don't really feel that way, I have been packing up the baby things that are now too small and passing them on. My favorites I am saving for any future nephews (ahem... that's future nephews... ya know, when ev...). The rest are going to friends, or the shops that resell used children's clothes (my favorite way to outfit my crew).

There is one item, though, that is being tucked away in my sock drawer. A keepsake of the baby years. A representation of the beginning of my Motherhood, and a sweet memory of each set of little feet that wore them.

These.

Each of my newborn boys sported these sweet little froggy shoes.

I bought them myself, for more money than I would normally spend on such a small item. I can remember the day, the store, the way I felt. It was a special day, actually. It snowed. Right here on the coast. I drove through the snow to go buy these little shoes.

What I can't remember about that day is if we knew yet. I can't remember if I bought them before we were made of aware of the possibility of Down Syndrome, or if all we knew at that point was that Charlie was hearing impaired.

I just remember feeling so raw. Postpartum. Things were not going like I, well, like I had played it out in my mind beforehand. I was struggling with great disappointment confounded by the deepest love, and the feeling of being so small next to the mountain of Becoming Mother.

I needed to get out of the house. Do something normal and anonymous. So, I packed Charlie into his carseat, threw a sling in the back, the diaper bag, my wallet. Off we drove to the Storkes Nest in McKinleyville. Through the snow.

I probably ended up with the froggy design because it was marked down or something. I felt absolutely compelled to buy him a pair of these fancy baby shoes. In some way it felt like it validated him. They were the thing to have when Charlie was an infant. Surely if he had his own, he would somehow seem more normal. Just another baby boy. With trendy leather shoes.

It was cathartic to me to shop for him. To walk around that boutique. To show him off to the staff, who of course commented on his cuteness. (He was so cute.) I probably took far too long to pick them out. I probably compared each design, worrying too much about how people might prefer elephants over the frogs. Such a weighted decision.

Getting out of the house that day--if only to buy leather booties--it was like an initiation into Motherhood. A declaration that I can do this. I can pack my baby up in the car and go somewhere with him all by myself. I can remain calm if he fusses while I drive. I can figure out how to use the sling, and shop with my baby tucked in close to my heart. And while a $30 pair of shoes for an infant might be pitiable in comparison to his intrinsic value, that day it sure felt lavish to shower my son with such fine footwear.

Charlie wore those shoes far beyond the 6 month mark of their size range. His feet were so small. Calvin wore them for a shorter time. And Miles. I squeezed his little sausage feet into them for as many weeks as I could.

Now it is time to put them away, not in a box in the attic, but my sock drawer. I don't know how my sock drawer became the spot where sentimental things come to rest, but I like that as I rifle through the drawer in search of some lost sock, I come across things that represent moments of achievement and dear memories.

In you go little shoes.

Baby Boy is 6 Months Old

2011-05-16T13:28:00.000-07:00

We've a six month birthday tradition in our house...

Food!

My gosh. Six months. Miles, these months have passed by us quickly. Seamlessly. Oh, life is crazy around here. An absolute circus. But we expected it this time. Prepared for it, and told ourselves we would not freak out over a sink full of dishes or stray toys in the wrong places or miss matched socks on our feet.

And so, for six sweet months we've been getting to know you. We've watched you meld into our family, and our family has formed a new spot where you fit so nice. We have new daily rythms that involve baby-care. We have new family rules to help excited brothers treat you gently... Though, they are doing their best to help you toughen up for boyhood, let me tell you.

Miles, we have a saying in this house when our day is going poorly. We say, "Well, at least our baby is cute." And it is true. You are so beautiful, and ever willing to offer a smile. When I wake up to you tugging my hair in the morning, I turn over in bed to find the brightest, most wonderful smiling face.

Six months. It feels like you've always been a part of us.

He just lets it all out there.

2011-05-15T16:48:00.000-07:00

Charlie wears his heart on his sleeve. There is no voice inside of him that rationalizes about whether or not it is appropriate to display a certain emotion. Well, there is. A touch of shyness around adults does yield more composure in public. But in his most comfortable state, he just lets it all out there.

This is overwhelm.

If something does not feel right, he melts into a puddle of a boy on the carpet. He cries. He yells. We offer comfort. We offer juice. Anything we can think of. But he just cries. He wants to be held. Tight. Every other thing seems shadowed by special needs for an afternoon, a day. A week.

Ray and I have to protect our time. Most often life is just kinda regular--you know, our own version of normal--but we never know when our "special needs" guy is gonna really ramp up the "needs" part. We need to team up, or risk feeling raw and resentful by the end of a rough day.

No child deserves resentment from his mommy or daddy.

Of course, having less of an emotional filter works the same for happiness. And that is the plus side of it. Spontaneous and indiscriminate Joy. To experience a tackling kind of hug, and an "I wuv you, Kimma!" and kisses. To hear him tell his little jokes and just laugh and laugh until tears come to his eyes. "That's si-wee!" he says.

Did you ever see a smile so bright?

There are moments when Charlie does something we did not yet know he understood. His little face shines and shines at his own learning. Ray and I glance at each other as we witness this cleverness right before our eyes. It feels like a miracle every time, and the thought comes to mind: What would we do without him?

Not sure exactly what I am trying to say here. Just, I "wuv" these boys so. I'm ready for the return of more cheerful days for Charlie (he's been sick... and needy). And if the baby's two top teeth would just pop through those swollen gums already.

The Rhoddy Parade

2011-05-10T13:39:00.000-07:00

Catching up on some happenin's around here.

A couple weekends ago we packed up the kids and headed to the front lawn of good friends who live along the parade route for Humboldt County's Rhododendron Parade.

The Firetrucks going by with sirens blaring.

He obviously saw "two" of something.

Now whenever I see a tear on his cheek I think "Blepharitis".

The finale for us was to see the Timber Heritage Crew Car go by.

Do you know what this is?

2011-05-08T08:40:00.000-07:00

My very first piece of pottery made by a child of mine.

It feels like a milestone for me.

Charlie brought it home from school all wrapped up.

He told me this etching here is a ladybug...

Or, alternately, a dancing cowboy or a baby rabbit.

I think it is magical.

Happy Mother's Day.

Little

2011-05-06T14:55:00.000-07:00

We ask this boy to be so big.

And then a moment like this happens, and I'm reminded

He's still just our little guy.

On the Down Syndrome Path to a Home

2011-05-05T19:32:00.000-07:00

It's funny to say that. It still feels kind of wild to think that I have a son who has Down Syndrome.

Wait. What? I know. Where have I been, right? But seriously. Down Syndrome is one of those things that we all have our preconceived notions about, good or bad. And Down Syndrome is something that happens to other families... not our own. It's rare.

Sometimes I have to stop and remind myself we are on a different path. There is a reason I have to be more patient with Charlie, more creative, more steadfast and headstrong and full of wit and, to be honest, willing to change my life plans. Regularly.

Charlie is so amazing. I know I say it all the time. I love him dearly. And he poses some interesting... Hm. Considerations?

Tonight I am thinking specifically of home. A home to dwell in. We will be moving soon to a larger house. Why? This one is not Charlie friendly. The new one will not be perfect either, but better. An environment where Charlie will be safe, and out of trouble, and fairly independent is going to be a big thing. For all of us.

We make an awful lot of family decisions with this little boy in mind. We are on the Down Syndrome path. We research and calculate and plan and try to find the best situation for Charlie, because it is what is best for him, and when he is supported, quite frankly, our lives are simpler, too.

This is challenging for me, though. To want the best for him is natural--second nature. I barely think about it. Our other boys, they will do well wherever we land. But the house hunt? It leaves so many things up in the air. Yes, we are moving into a better place soon, but we can't stay there forever. So the hunt is on, in earnest. It's for real this time. But there are so many logistics:

Do the elementary schools have the right kind of support and programs for Charlie (and do we like it)? Is the house on a busy street? 'Cause we can't have that with a runner on our hands. Is the backyard secure? Is the bathroom easily accessible? Can the kitchen be blocked off or otherwise baby-proofed long-term? Are there stairs? Are they steep? Is there a landing, or do they go top to bottom straight down? Can the car be parked off the street? Is the front door able to be secured? Will the neighborhood allow a fence in the front yard, in case the front door does get opened?

And those are just the things on the Charlie list. Our family list is complicated as well with a limited budget, and well, our preferences.

I keep thinking, "God, you have given us this Charlie boy, please provide what is best for him." I know He will, and I'm excited! But I have this idea that everything needs to be in place by the time he begins kindergarten a year from next fall. That is a while from now, so that is what I keep telling myself. It's just hard to have a laundry list of logistics, and feel deadlocked on it all. Either the house is perfect, but in the wrong neighborhood. Or the school is just right, but the houses surrounding it are all wrong. Not to mention this is all sort of intimidating. Are we doing the right thing?

If there is one thing a parent of a child with Down Syndrome learns to do, it is perform. Do stuff. Work at things. I'm making the phone calls. I'm searching the listings. Researching our options. But in the end it is about God opening up the right home in the right place at the right time. I pray daily. It is hard to wait and trust. But I suppose...

I suppose after all these years following Jesus' lead, it would be dumb to toil without him now. He is the one who gave us this miraculous little boy at a time in our lives where it just did not make sense, and helps us daily as we love and raise him, and indeed all our three boys. We thrive by Him.

I think I just talked myself into some patience. Thank God.

He Takes His Bottle Hamster-Style

2011-05-02T09:38:00.000-07:00

So you know how hamsters and rabbits have that bottle with the metal spout hanging upside-down in their cages? They sort of lick or bite the end of it to get a drink.

Case in point.

I am the mom that could not teach a baby to use a bottle. I'm great at breastfeeding. I kick some serious breastfeeding butt. But the bottle? Well, it's never happened for me or my guys.

With Charlie, we chalked it up to Down Syndrome. For Calvin? Bad luck, I guess. With Miles? Well, I think it must be me.

Never-the-less, Miles thinks a bottle is great fun. He is entertained through an entire meal by a bottle with a half-inch of water in the bottom.

Of course, when it comes to real hunger, there is only one way that satisfies. And drinking a bottle hamster-style just won't do for that.

Blepharitis and Down Syndrome: Well, that's a new one.

2011-04-29T18:50:00.000-07:00

Charlie does not wear glasses, but we see an opthamologist regularly because, well, that is just a given when you have Down Syndrome.

We can't take him to just any opthamologist at this point. We need a doctor with mad kids-who-won't-cooperate skillz. At this point Charlie could identify pictures on a chart, but even if he feels like cooperating (which is unpredictable), there is just no guarantee that he would (1) identify them correctly (leaving us to wonder if he sees them or not), or (2) launch into his little comedy routine where he identifies everything as "grapes!" followed by hilarious laughter. Very cute, but not helpful.

Lucky for us Dr. Paul rolls into town every few months to do a clinic for children with special opthamology needs. Our appointment was on Saturday. Charlie did great.

The kids who come to the clinic first go back for their initial check-in with the nurse, who ambushes them with a squirt bottle of the pupil dilator stuff (that would be the pharmaceutical name), then they are sent back out to play in the waiting room until their turn with the doctor. There were two other little boys waiting at the same time as us, both about Charlie's age. Thank goodness there were plenty of cars. They were cute, rubbing their little eyes, each one of them talking with interest about getting their eyes squirted. "Did you get your eyes squirted?" "Yeah, that nurse squirted me, too!" "Are you going to get squirted?"

So, Charlie's appointment went great. He continues to be mildly far-sighted, and we are told this is plenty normal and we need not go back for another two years. Nice!

As the doctor peered into Charlie's eyes with his flashlight and mirrors, he begins to say, "I need to tell you that children with Down Syndrome are extremely prone to Blepharitis, in fact Charlie has it right now. You can see how his eyelids are a bit red and puffy..."

Blepharitis. That's a new one, I think.

He goes on to tell me Blepharitis is not a big deal. He likens it to having dandruff. It is a bacterial infection in the eyelid/eyelash area. It causes the eye to be itchy and the eyelid to be reddish and puffy. The treatment?

Treatment is ongoing eyelid/lash hygiene. "Get yourself some tear free shampoo (got it!) and shampoo Charlie's eyelashes and eyebrows every time you wash his hair. (say whaaa?!) He will need to learn to do this, and it will be ongoing hygiene for the rest of his life."

So, this is a pretty easy treatment. I mean, of all the possible health issues on the health issue list for Down Syndrome, this one is cake. But washing Charlie's hair... It's dreadful. He is so sensitive to water on his head, face, and neck. I could probably count on one hand the number of times we have had a tears and scream free hair-washing. Shampooing his eyes? Oh goodie.

Since last Saturday we have only had the guts to try it once. It wasn't as bad as we thought. (Well, Ray was the one who did it, so for me, it wasn't bad at all!) So, that is a good start. And hey, maybe having ones eyes shampooed will make washing ones hair seem less tragic, right? Plus, I can't imagine that it feels great to have chronically itchy, puffy, irritated eyes. I thought they were just "like that". Who knew?

Sweet boy.

Look who's sittin' nice and tall...

2011-04-22T08:19:00.000-07:00

I suppose if a guy decides to start smiling by 3 weeks...

babbling by 6 weeks...

sprouting teeth by 15 weeks...

then you might as well learn to sit by 20 weeks.

This little fella is in a hurry to be big.

Make that TWO in Diapers

2011-04-20T09:00:00.000-07:00

Need I say more?

Calvin decided last week that it was time. Okay, a little hot chocolate bribery helped.

I haven't changed a diaper on him in over a week. Not one accident. He takes himself to the potty. He manages his own clothing.

He says things to me like "Oh! My body is telling me to go potty!" Thank you Nama Gale. Thank you. Thank you. Thank you.

One down. Two to go.

Up the Fun

2011-04-18T14:53:00.000-07:00

Guess who is 5 months old?

How did that happen?

Raymond and I comment to each other all the time that 5 months is so little time, yet we feel like we've had this little guy with us always. He's an easy going guy like that.

Mellow Miles. Mild Miles. Mr. Smiles. Miley-Miles.

He is just what we needed. Extra work and more demands aside, Miles has helped us to take ourselves less seriously these last few months. I dare to think life--even potty training--would be more difficult without him.

There are many occasions where, I will admit, my default would be to go into robo-supermom "git' er' done" mode with my bigger boys. Thankfully the unduly-stern mama face just can't stick around too long with a pudgy, squealing, drooly little lump of squeezy-love attached to my hip.

He ups the fun. And things still get accomplished somehow.

I wake every morning to this little face staring straight back into mine.

Cutest Damn Baby: When your baby looks different.

2011-04-14T15:13:00.000-07:00

Pardon the language. There is a story that goes with it. My friend Katie and I know the story as the "Cutest Damn Baby Story".

Charlie was just a little baby. Maybe 4 or 5 months old. He and I were at the Co-op where we bumped into Katie and her sweet little Anna. We were in the produce section chatting when a scruffy fisherman-looking type man in his 60's (are fishermen scruffy?) walked past, and noticed our darling babies each tucked in their slings. He stopped briefly to engage the babies in some sweet little baby-talk banter. Later I past the same man in the bulk food section, where he again took notice of Charlie. He doubled back a third time to take another look. Upon that last time he past by I overhear him mutter, "That is the cutest damn baby I ever saw."

Down Syndrome is one of the special needs that comes with a "look". When we, and other family members and friends, were first letting the Down Syndrome diagnosis sink in (which, lets face it, takes a while sometimes) we heard the sentiment "He really does not 'look' Down Syndrome at all." Should it matter? I don't know. But one of the aspects of raising a baby with Down Syndrome is coping with a child that looks different.

When Charlie was a baby, I would debate about whether I should blurt out to people that he had Down Syndrome, or if they would already know from the way he looks, or if it was important information for the world to know, or if it was better people not know if they could not tell, or, or, or.

Call me shallow, but I'm not alone. When you never imagined your life would be inexplicably linked with a child who has special needs--never really considered it at all--and then all of a sudden you are not only processing what this means, but everybody around you can tell... well, it is something a parent needs to wade their way through. And fast, 'cause everyone knows.

So how did we feel about it? I did feel sensitive about Charlie's looks at times. His tiny little nose. It seemed impossible to me to get a photo of him from an angle that did not make it look like you could see straight up into his sinuses. His short little arms and legs and big tummy made it hard to dress him. I worried people would think he was overweight. His tongue stuck out a lot. And when he got his hearing aids, well, it was one more thing to look at. To make him stick out.

But also, we loved the way he looked. We were quite vain about it at times! He really was a darling baby. All those Down Syndrome features seemed to make him seem even more baby-cute. His button nose. Cupid lips. Round chubby cheeks, and roles of sweetness all over his little body. His head was perfectly round. People at church would practically take a number to get a Charlie-cuddle. Ladies would gush over him in line at the super market. Weathered fisherman-types would go out of their way to look upon him.

Cutest damn baby, indeed.

More about Babies with Down Syndrome can be found here.

Life doesn't have to be big to be good.

2011-04-11T16:04:00.000-07:00

We had a visit from old and dear friends this weekend. Ray's best friend Jason, and his wife Rebbecca and beautiful daughter Alexandra. After a stop over at Dick Taylor Craft Chocolate Factory, we met up at Redwood Park to enjoy the morning together.

I love the way the joyful shouts of children sound on a breezy day.

The ever popular "digger".

Fun. Fresh air. Bodies moving.

Not to be outdone by the "tall slide".

Life doesn't have to be big to be good. Does it.

There's a first time for everything. I think Miles is contemplating a nap here.

So Much Sweetness

2011-04-09T16:41:00.000-07:00

I am so blessed to have a baby like Miles at this crazy time in my life.

There is so much sweetness woven through every part of this baby boy. I knew there would be. I feel as if I've known him forever. I feel as if he's known me.

Nama Gale's "Pee from Your Brain" Potty Training Day Camp

2011-04-08T08:50:00.000-07:00

The potty training saga continues.

First. Both boys have made major strides since my last update. They are both able to be dry all day... as long as mom and dad remember to take them often enough. Even Charlie is doing really great. He is holding it longer and longer between going, and when we sit him on the potty he goes right away, then stands up and says, "I did it!" We are getting there.

Earlier this week, though, we had a wonderful opportunity to work on some potty independence with my friend and pastor, Gale, who has potty trained a number of children over the years. Gale's grandson (who calls her "Nama") is the same age as Calvin, and is also working on potty training, so the two boys got together for a potty training day camp time.

Potty? Check. Extra clothes? Check. Baby? Check. Three-year-old with water bottle full of juice in hand? Check. Now we are ready for a day of Potty Training with Grandma Gale.

Our goal for Calvin for the day was to help him become more aware of the signals his body gives so that he can recognize when he needs to go potty, and then take care of the matter himself.

Gale started with an anatomy lesson, showing the boys the digestive system, how food gets broken down, how it comes out. The kidneys, the bladder, how the bladder gets filled up and then sends a signal to our brain that tells us we need to go pee. Calvin soaked up the information.

Then it was time to play. And wait for someone to have to go potty. "Don't forget to listen to your body, boys."

The idea with Gale's method is that accidents are learning opportunities. When the boys had an accident, they were responsible to take off their wet stuff, get new clothes, and practice running to the potty so the next time they would know what to do.

Calvin did a great job listening to his body the first time he had to go. He ran as fast as he could to the potty, his eyebrows raised with urgency. Got there just in time. He was over the moon with pride for himself. It seemed like a light came on for him.

"I gotta go!"

"I can do it! I listened to my body, and I did it!"

Calvin got a treat for his effort. He also got to make a phone call to the person of his choice to share his exciting news. Calvin chose to call his Grandpa. The phone call went like this:

Calvin: Grandpa I went pee!

Grandpa: Wow, you sound so excited!

Calvin: I did it! I went pee! It came from my brain!

Thus: Nama Gale's "Pee from Your Brain" Potty Training Day Camp.

"Hey, I think I've got something here."

The next time he had to go, he had an accident. So he practiced several times running from the spot where he had his accident to his potty. He did a great job.

The experience was great for Calvin. He had some really great success and was encouraged in his efforts to be "big". At home, the practice has not been perfect. I was hoping to not revert back to pull-ups at all, but that has not happened entirely--mostly, but not completely. He is actually dry nearly all day, sometimes with an accident during nap time. It's the poop. That is not happening in the potty with any kind of consistency, and when I have the baby needing baby things, or Charlie needing Charlie care, then I'll be honest, I'd rather clean poop quickly and easily from a pull-up than have to deal with the mess it makes inside of underpants. We are getting there, though. We really are! I just might survive this.

Don't forget to vote today.

To Reach Out More

2011-04-06T08:36:00.000-07:00

I feel incredibly honored that I have friends, both in real life and on the internet, who consider our little blog worth reading along. Thank you so much. Thanks for your support, and indeed scratching my back as a writer and a mom that our story should interest you. My main goal for this blog have always been:

To chronicle the childhood of my children.

To show friends, family, and others that a life with the challenge and joy of Down Syndrome is just that: a challenge and a joy, and a lot of "normal" too. Charlie is doing great. And so are Miles and Calvin. We roll with it. Most of the time.

And last, to encourage parents who are facing a Down Syndrome diagnosis, or who are struggling in some other way with raising a child with Down Syndrome.

I love that word: encourage. "En" means "to make" or "to put in". Let me put courage into you with our experience. Our story.

So this is where I am going to ask for a favor from those who have enjoyed Charlie's Up To...

It turns out, parents raising children who have Down Syndrome do find this blog. Quite often in fact. In the past couple days people have landed on my little blogspot when searching the following:

"raising a Down Syndrome Baby"

"Down Syndrome"

"Concerns for babies with Down Syndrome"

"5 year old diagnosed with down Syndrome has low muscle tone"

"baby diagnosed with Down Syndrome after birth"

"Down Syndrome health concerns"

When I see this information on my little site visitor thingy (that would be a technical term), I just want to reach through the screen and offer a big hug. I want to hold that newborn with Down Syndrome. Oh how I miss that feeling. I am in the unique position of saying, "I know how you feel. And look. It will be alright. You can do this." It gives me renewed passion to keep writing about my family in this public venue. It encourages me to get this little blog out there.

Will you help me get it out there a little more?

All you have to do to help me reach out a little more on the net is click the button below and vote for Charlie's Up To. Just look for the picture that I included at the top of this post (I'm kinda towards the bottom right now). You can do it daily, so I will keep the button on the side bar and on the bottom of my blog posts until the voting period is done. Thank you so much for helping me to do this. It means an awful lot.

Raising a Baby with Down Syndrome: Developement and Pride

2011-04-04T10:30:00.000-07:00

If you would like to see all the posts in the "Raising a Baby with Down Syndrome: What it's Like" series, click on the Down Syndrome Resources page beneath the site banner for the full list.

I'm on raising my third baby right now, and I can tell you there is a difference in how a parent feels about developmental milestones between a baby who does not have Down Syndrome and a baby who does.

Laying on his side helped him bring his hands to mid-line, an important first skill.

The love and admiration is the same for all my children, but the way I see their accomplishments is different. For Miles and Calvin, growth and development seem to flow from their little bodies and minds. As they move from one stage to the next I look on with amazement. It is so miraculous to me the way our brains unlock the world for us, and we leap forward in our person-hood. Love, shelter, nutrition, consistency, protection. We need all these things to grow, to change, to mature, to, you know, learn how to roll over. Miles is so intent on handling toys, manipulating them in his hands, bringing them to his mouth. I did not teach him these things. All I did was give him the toy.

Charlie's development, especially as a baby, was not automatic. It was lengthy and slow, and required assistance. He did not learn to hold toys so effortlessly. We had to prop his arms up with towels so they would not flop back to the floor. We had to choose toys that were light and easy to grasp. When he was learning to crawl I had to physically teach his body the movement of hand, knee, hand, knee. So, you want to know how I felt when he finally did grasp a toy, bring it to mid-line, then transfer it to the other hand? I was over the moon with pride.

No mother was ever prouder.

Play is therapy. Charlie works on pushing up with his arms.

Development was slow. At times we would begin to wonder if he would ever learn a certain skill. And then he would. In fact, it was an ongoing pattern: work and work and work and work, then begin to wonder if it was possible, only for him to catch-on in the face of our doubt. And then, pride. Pride and excitement.

He can do it! We didn't know if he would, and then he did!

Charlie learned to sit around 8 months, crawl at 14 months, and walk at 28 months.

And the pride was not just our own. It was also a community pride as our extended family, our church, our friends clapped and cheered and marveled at the shear possibility wrapped up in this little boy Charlie. This is one of my favorite parts about raising a child with Down Syndrome. Possibility continually reveals itself, and to be honest, while we did not relinquish the idea of what was possible for Charlie after we found out he had Down Syndrome, we did kind of hold it in abeyance as we proceeded forward, wanting so badly to know what life was going to be like but feeling so unsure.

It's like finding something that was lost. It's like a receiving a gift that we longed for.

Charlie played on yoga mats because the non-skid surface helped him move around easier.

In fact, all the possibility and purpose wrapped up in our little boy Charlie is the main reason for which I started this blog. Other parents need to see it. To believe in it like we are able to now, having walked the path of a Down Syndrome babyhood.

Well, just look at the pictures. Read our story. It is not always easy, but it is so exciting. Possibility is written all over this little boy and his story.

Raising Boys

2011-03-31T14:51:00.000-07:00

Have you noticed those nifty tabs along the top of the blog? I feel so savvy for figuring out how to put those up there (it's actually pretty easy), and have had fun as I begin to fill them with (hopefully) very useful information.

There is one tab along the top that is missing. It is the tab called "Raising Boys." A subject of which I feel I must be on my way to becoming an expert. But that is just the thing. Raising boys baffles me.

Their behavior. Their energy. Their way of communicating.

Those who know Humboldt County, California know it's a liberal area, especially Arcata. I attended Humboldt State University, a liberal college. My experience here is that there is a strong tendency to group male and female, boys and girls all together as far as behavior and interests go. But, I will tell you what, even in this area where it is not okay by any means to stereotype a person based on gender, I have heard time and again a mother of a boy relate that it is... different. Raising a boy in many ways different than raising a girl.

And this is where I am stuck in my parenting journey.

First, I'm not a man (gasp!). I had a sister, not a brother. I freely admit to hoping for girls each time we were pregnant. Why? Well, to be honest, the way boys play is a little disturbing to me. I don't know what to make of it. And Calvin, well he is at the age where his play, his way of communicating, his approach to exploring his world is starting to make me wonder if I am supposed to discipline him and discourage him from using forceful language like "I'm going to jab you!" Or, is it okay to just play along and feign death as he wields his imaginary sword?

He is an absolutely beautiful boy, our Calvin David. Just this afternoon he leaned over and whispered in my ear, "Mom, I love being your child." And the girl, sister, daughter, mom, and woman that I am wishes he would be that caring little bearer of endearment all the time. But he is that one minute, and the next he is whacking his toy guitar on the bed after a solo rock concert as hard as he can just to test his strength. Of course, the guitar will bounce off the surface of the mattress and smash him squarely in the forehead. He will again be reduced to a cuddly mess of a boy, tears wet on his cheeks. He needs his mama.

And that is the enigma. Who am I to this boy? What is he exactly? Do I stifle his sense of adventure to say, "Oh, we don't jump from lofty heights in this house to test our strength lest we get hurt"? Or do I let him (it looks like fun), and figure those couches weren't going to last forever anyways.

My sister and I were active, romp all around children. My parents added on to their house to expand the area in which we had to flip and cartwheel, so I realize the activity is not just a boy thing. But I remember being more calculated. More safety aware. The boys... it seems they are all "Do" and the think part comes later. They are forceful. Every body slam, every foot race, is an experiment in their own strength. It's as if they are satisfying a deep need.

So, for now, I try to teach these boys that there is a time and a place. Inside is a place to practice self control. Oh to teach a 3 year old on a rainy day self control! The key word really is try. Outside is the place where amazing feats of strength are to be enacted.

I aim for the delicate balance of incredible patience and absolute consistence. The wisdom to know which is appropriate and when. I am happy at the end of the day if I actually did let my actions yell, er, speak louder than words.

And, I seek out the advice of experienced parents of active, brilliant boys. What is a mother to do?

(No really, what is a mother to do? Stories, book recommendations, links to posts about boys very welcome. I will add them to a Raising Boys tab at the top as I collect and enjoy them.)

A Converstation Between Brothers

2011-03-29T13:51:00.000-07:00

A little conversation we had in the van yesterday.

Charlie: Where's Daddy?

Mommy: He's working in Blue Lake with Grandpa.

Charlie: Ohhhhhh! Boo-ake!!!! I see.

Calvin: No Charlie. It's not Boo-ake. It's Bwue Wake.

Charlie: Ohhh. I see. Boo-ake.

Calvin: No Charlie! Not Boo-ake! It's Bwue Wake.

Charlie: No. Boo-ake.

Calvin: Charlie! It's NOT Boo-ake! Say Bwue. Wake. !!

Charlie: Boo-ake!

Calvin: Bwue Wake! Bwue Wake! Charlie!

Charlie: Oh. I see. Boo-ake!

Babies with Down Syndrome: Health Issues

2011-03-27T16:39:00.000-07:00

When a new parent has a baby they probably have prepared for the experience by purchasing a baby book that talks about general baby care, common childhood illnesses, first aid. What is not included in the baby book is a list of serious medical conditions and what the chances are that baby will have them. It's a good thing too, or we might all parent with a lot more anxiety.

Our brand new to the world Charlie.

When a baby is born with Down Syndrome, however, it is important that parents are aware of the medical issues that commonly affect babies with Down Syndrome. So, we are given sheets by our pediatricians that explain each medical condition of which we need to look out for, the symptoms, the tests or treatments, and also, the percent chance that our child could have the condition. Then we Google it. We read the books. We get anxious and we wonder if we can do this. So, what is it like?

Medical issues that may affect babies and children with Down Syndrome are: Heart Defects, Gastrointestinal issues, Respiratory problems, Vision issues, Hearing impairment/issues, Thyroid problems, Orthopedic problems, dental problems, Leukemia, Weight issues, Seizures. Wow. That is a laundry list, isn't it? Some of these, like heart defects (45%) and thyroid issues (13 to 54%) are more likely, while others, like leukemia (1%) and seizures (6-8%) are less common. These figures are from the popular book Babies with Down Syndrome : A New Parent's Guide, which I recommend for a comprehensive list and information.

Our newborn baby Charlie, before we knew he had Down Syndrome. Look how big his belly is! He still has a "Budda Belly" as we call it. It is not fat, it is due to low muscle tone. This means his muscles are very loose when not flexed so they don't hold his tummy in very well. Some babies with Down Syndrome may have medical issues involving their digestive systems that could cause their bellies to be distended like this, so it is very important to have a distended belly checked into.

For Ray and I, knowing each potential medical issue and having a rudimentary understanding of the symptom sets, lead to some anxiety in Charlie's baby years. There were more than a couple times where I began to work myself up, convincing myself that a set of symptoms was leading to something far more serious than the simple cold that it was. Most of the time, my fears were unfounded.

Of course, we did deal with some of these medical issues:

Charlie deals with respiratory issues. "Baby's first cold" at 3 months for Charlie turned into a serious bout of Bronchiolitis that earned him a life flight to UCSF medical center and a week in the PICU. His case was serious because he would stop breathing every time he cried. It was believed this was due to his having "floppy airways" (technically called trachea malacia), that, and a partially collapsed lung. He healed beautifully in the end.

Charlie in the PICU at UCSF Medical Center.

The bronchiolitis was our most serious and scary respiratory illness experience by far. Charlie does tend to have asthma when he is ill, but as he grows the asthma is not as big of a deal. When he was a baby it meant giving him nebulizer treatments at home, and the occasional trip to the ER for more powerful drugs.

Charlie had reflux (think "excessive spit-up") as a baby and toddler. I think of all the medical issues that can come along with Down Syndrome, this one was the biggest deal for us. The acid reflux wore away the lining of Charlie's esophagus lending to poor sleep, and a long delay in him learning to eat due to pain. After we began treatment with medication for the acid reflux at age 15 months, he immediately began to sleep through the night, and after 6 weeks for his esophagus to heal he began to eat. Reflux seems quite common in Down Syndrome from my experience as a parent getting to know other parents.

One of our first attempts to feed Charlie. He used to take a bite or two, and then cry and cry. We finally began treatment for reflux at 15 months, and after the erosion in his esophagus healed he began to enjoy food very much.

Finally, Charlie had hearing issues. Moderate sensorineural hearing loss, which is less common in Down Syndrome than a conductive hearing loss that is due to fluid in the ears. Charlie no longer has hearing loss. And, in fact, despite having tiny little ear canals as is common in children with Down Syndrome, Charlie has never had an ear infection. Actually, Charlie has only had one round of antibiotics in his 5 years of life. Not too many "typical" children can claim that! Pretty healthy boy we have here.

This picture shows baby Charlie wearing his hearing aids. He had hearing aids from age 5 moths to 15 moths when we discovered during a routine hearing test that he had gained normal hearing.

So, Syndrome refers to a group or collection of symptoms that when they occur together make up a condition, like Down Syndrome. Any child can be hearing impaired or have almond shaped eyes, but when several symptoms or conditions common to Down Syndrome occur at once, it sort of tips a doctor off that Down Syndrome may be the cause. Charlie neither has or is doomed to have all the different medical issues related to Down Syndrome, and some children will have more issues and some may be perfectly healthy.

A child who has more medical conditions is not "more affected" by Down Syndrome. Down Syndrome is something that you either have or don't have by the presence of a third 21st chromosome, and it is expressed differently in every person. A person with Down Syndrome who has many medical conditions will not necessarily be a person with more cognitive delay, and vise versa. This is the same for the physical features. A person who has Down Syndrome but does not "look like it" will not be less affected cognitively or medically.

It is just sort of a mixed bag.

So much more that a set of symptoms. Every little extra that comes with Charlie's care is worth it to me.

So, what was it like? First, Charlie was our first child. We didn't really have any point of reference for how things may be different. Second, Charlie is so much more than a set of symptoms or complications, so we did all that we needed to do for him medically with gladness. We naturally wanted the best possible health for our child, and it seemed no chore to pursue that. I think I was a lot more vigilant about Charlie's health than I have been with our other babies. I was very organized out of necessity--we had a lot of check-ups and appointments. Charlie is actually a very healthy little boy, and once we got past the baby years, it seemed life really settled down medically as we have a sense of what is and is not going to be an issue for him.

As always, I welcome questions and comments. I realize the medical side of Down Syndrome can sound intimidating, and I am willing to help answer questions about what it is like to care for a baby with extra needs. Also, please check out the links in the Down Syndrome Resources Tab above, especially Downsyn.com Forum where you can search for other parent's posts about certain concerns and topics, and ask questions from parents who have been in your shoes. There is no reason to be on this journey alone. Be encouraged!

**I just wanted to share that this post was written with the company of one very affectionate five year old boy sitting upon my lap. A five year old boy who has been trying to convince me to put his favorite computer game on this entire time. My five year old Charlie, Down Syndrome and all, who is so clever. Who plays computer games. Who chats with me while I blog.

A Comforting Hymn

2011-03-25T20:23:00.000-07:00

Each of our boys has their own special lullaby. We did not plan that, it is just what happened.

Charlie's lullaby is Silent Night.

Calvin's lullaby is a also a Hymn, Be Thou My Vision.

But this story is about Miles' song.

When I was a child, I had a special way of dealing with anxiety. A way that involved darkness, layers of starlight, the sharp shadows of pine needles. And Hymns.

I grew up in a little mountain town called Truckee, in the Sierra Nevada Mountain Range. Our house was in a sparsely populated neighborhood where most of the homes on our street were cabins, uninhabited most of the year. There were no street lights. The air was thin at 6000 feet elevation, so you can imagine what the sky looked like at night.

It was beautiful. The deepest navy, filled with bright stars. Beyond the bright ones were faint ones. Layers and layers of starlight.

Below the sky was a mountain range, just a black silhouette in the distance. Our house stood among tall pines that would sway back and forth during a storm, but on the starry nights--the dark, sparkly nights--the motionless pines framed the sky above in needled fringe.

I would sit on my bed at night and look out my window at the stars and sing softly. To me, the very act of singing hymns out into the night was like enacting a Holy kind of protection I could count on. It gave me peace in the dark and the silence on nights when my mind would begin to race. Three Hymns in particular: Holy, Holy Holy, Lord You Are Beautiful, As the Deer.

Some have read the story of Miles birth. It didn't go so well. It was traumatic for me, and it was traumatic for him. We were separated for some hours afterward, always with people or machinery between us. Miles was in a pitiful condition, having a hard time breathing, a hard time settling down. He was frantic.

After a few hours of trying to settle him and figure out what was wrong, trying to get him to breath well and simultaneously planning his transport to a NICU, our pediatrician decided to do something unusual for the situation. She decided to bring me into the nursery, and let Miles nurse... To see if a mama's touch could settle him. Soothe him enough to take a deep breath.

I was wheeled in, not doing so great myself, running a high fever and, you know, just given birth. My baby was plucked off the warming table, tubes and wires following in a tangled mess, and gently placed in my arms. I looked deeply into his face. I hadn't yet seen it but from the side. He continued to scream and grunt. And at a time where he so needed comfort, and also I, a song came to me.

As the deer panteth for the water, so my soul longeth after Thee.

Miles calmed immediately, and nursed as if it was the first drink he had taken after a long journey through a desert.

The song came over and over. Raymond and I sat and took in our new son, our son who was now quiet and still, save for his hungry gulps. We stared at the monitors hooked to his body, and watched his pulse calm down, his oxygen levels slowly rise. The nurse turned off the light in the nursery, and we continued to sit in the shadows nursing amidst the beeps of monitors, watching our baby settle into his life.

That is how Miles got his song. His lullaby. And, while I don't care to go through trauma like we did that night ever again, the whole thing is worth it to me for that moment in the cold, quiet hospital nursery.

Even now, when Miles is unsettled the song comes and does its work like a miracle. A miracle for us both. He is calmed. I am calmed. He listens and remembers those first moment of being reunited with his mommy, those moments where stress and fear left his body. Maybe he does not know what it means, or why he suddenly feels well and whole and fine. He just knows all is okay again.

When I sing it, I am reminded of the cold metal daybed against my arms, the stars over the house, the way the needles on the trees seem to point like fingers to the sky, the feeling of what it is to have the hand of God come to me as a child.

And the very promise of peace.

Diagnosis Down Syndrome: Settling In.

2011-03-23T15:33:00.000-07:00

The first thing given to you as a parent of a child with Down Syndrome is probably a book. A dear little book called Babies with Down Syndrome: A New Parent's Guide. I still have my copy, and have had the good fortune of loaning it out once, and hope I may be able to again.

It is a thorough book addressing all the important medical and developmental things of which a parent of a baby with Down Syndrome should be aware.

I remember getting the book. It was given to me by Charlie's infant teacher for the hearing impaired during the painful three weeks in which we awaited his diagnosis of Down Syndrome.

I will not give this book a poor review. It is very helpful, and perhaps most importantly it has pictures. I lived for pictures of other babies and children with Down Syndrome when we were starting out on this journey.

The book, as I said is thorough, and good information. But when I loan it out, or recommend it to a new parent I give a caveat: Read it second, not first. The book touches briefly on the emotional impact of receiving a diagnosis of Down Syndrome, but mostly deals with all the extra health, developmental, and even educational stuff that comes in the Down Syndrome package. What I really needed at the outset, though, was reassurance, real life examples of families doing this Down Syndrome thing. I needed full color, large, beautiful photographs of babies with Down Syndrome doing "non-Down Syndrome-y" things... What ever that was.

You may remember my reaction on the phone with the doctor when he told me Charlie had Down Syndrome. "Now What?" I didn't mean it like, "Now-what-do-I-do-because-my -life-is-over?" It was just what came out of my mouth, but after reading Babies with Down Syndrome, I guess I expected the doctor to answer with a list of tests and check-ups and instructions. When he simply answered "Keep doing what you have been doing," well, it was that moment--about the second minute of Down Syndrome having entered my life--that I realized there was more to this journey than a baby with a series of extra needs, illness, and a list of "can't do's". Mostly, there was just a baby. The same little baby I'd loved and raised for the past 11 weeks.

Oh, I didn't stop reading books or doing Internet research. That is just not my nature. But I did begin to believe our life could be normal. We settled in, we did regular things like grocery shop with Charlie in a sling. I went to mommies groups. We passed him around at church, and dressed him up cute as we could. We didn't let ourselves be any less proud.

This is me doing "normal" baby things with my sweet baby boy. Taking him for a walk in our fav Ergo Carrier.

Now when I meet, in real life or over the net, a new parent of a baby with Down Syndrome I recommend books that have come out more recently like Gifts, or I give addresses of websites like Band of Angels. I recommend Woodbine House publishers, and also Internet support groups like Downsyn.com.

There is an entire movement, an campaign called More Alike than Different, and while I sometime scoff at the idea when I look over at Charlie as we are loading the kids into the van after a shopping trip, only to see him licking the door of the car next to us, in the overall scheme of things, from babyhood on, it is true. Our son with Down Syndrome, and indeed our entire family experience, is More Alike than Different.

More here.

Diagnosis Down Syndrome: What it's Like

2011-03-21T14:48:00.001-07:00

Typically babies are diagnosed with Down Syndrome before they are born--as early as the first trimester--or, at birth or shortly after. Our family story is a little unusual because our doctor did not suspect Charlie had Down Syndrome until he was 2 months old. In fact, Charlie's first diagnosis as a baby was moderate sensorineural hearing loss. Or, a loss of hearing that was permanent, and required him to wear hearing aids. Charlie, of course, no longer has a hearing loss, and in retrospect it is believed his hearing loss, and subsequent recovery, may have been due to a delay in maturation of his brain response to auditory stimuli. That or prayer.

Newborn Charlie.

The following are excerpts of my own journal entries, and reflections as I read back on them, written during the period of time when we were first dealing with Charlie's diagnosis of hearing loss and up through Charlie's diagnosis of Down Syndrome. A snippet of what it was like for us to go through the process of receiving a Down Syndrome diagnosis at almost 3 months of age. More of our family story of raising a baby with Down Syndrome can be found in the posts listed here.

***

February 9, 2006
Charlie, this has been so hard--not knowing the severity of your hearing loss. Having to wait and reschedule the tests and speculate. We've tried many little "tests" of our own.

I want to know that everything will be okay. That you can hear me when I sing to you. I want you to hear your daddy's guitar when he plays for you in the evenings. All this time, even before you were born, we sang, we played, we spoke to you. Have you heard us?

Reflection: Raymond is a musician. Music is hugely important to me, as well. We naturally had many expectations for how musical our child would be. We were told hearing aids would help him hear speech, but we worried so much about how it would affect his ability to enjoy and participate in music.

March 7, 2006
Why is this happening? With each new issue that comes up I feel as if I am being torn away from Charlie's heart. That my ability to connect, and affect, and understand him is shaken. Please, please let my little boy be okay. Please let him be of normal intelligence and development.

Reflection: I never intended to have so many prefabricated dreams for the life of my child. As we discovered and uncovered more issues, it felt like all that I had expected just came crashing down. All I was left with was pieces of the dreams I had made for our baby. I didn't know how to relate to him now that he wasn't who I thought he was.

March 12, 2006
Today I dreamed of a funeral. It feels as if a Down Syndrome diagnosis will steal away forever the baby I thought we had, even from before he was born. I don't want this.

Reflection: The wait was an incredibly painful time. Charlie is named for Raymond's Grandfather, Charles. A name that has been passed down for generations. In one dark moment I thought we had wasted an important family name on our imperfect child. A child who would never go on to have a family of his own. Raymond says the same thought occurred to him.

Charlie learned to smile in those three weeks of waiting.

March 16, 2006
Tomorrow is the day we hope to learn the results of the karyoptype. I am so afraid. Intuitively I know that if Charlie has Down Syndrome, we will eventually settle in to that reality and it will seem normal, but my heart does not believe that yet. Even if he does not have Down Syndrome, he is still hearing impaired and will have to wear hearing aids.

Reflection: Photographs of babies with Down Syndrome were so vital to helping me through the wait. I peered over them intently. I can remember one photo of the sweetest little baby boy with big round cheeks and a button nose just like Charlie's. He was smiling, and I remember thinking if Charlie would look and smile as sweetly as that baby, then just maybe I could do this.

March 28, 2006
I got the call from Charlie's doctor today. He said the results came back positive for Trisomy 21. I asked the doctor "Now what?" It was the only thing that came to me at the time. He responded to just keep doing what we are doing. And that was it. Charlie has Down Syndrome.

Reflection: Finally receiving the phone call... it was hard. I cried. But mostly I was glad to know, and move forward. It was kind of like, "Okay, I guess I know who you are now. It wasn't who I was expecting, but I love you the same. Let's get to know one another. Let's move forward and learn about Down Syndrome." There were still so many emotions to wade through, so many things to sort out in my head. But there was no longer the agony of everything I knew or thought to be true hanging in the air above me. Now I had a reality I could work with.

More here.

My First Mother's Day.

Having a Baby with Down Syndrome: What it's Like.

2011-03-18T14:59:00.000-07:00

March is a "Downsy" kind of month around here.

First, World Down Syndrome Day is coming up on Monday, 3/21. Get it? 3/21. That is, 3 copies of the 21st chromosome, which is what results in Down Syndrome, or Trisomy 21. Ya. Probably only parents who have children with Down Syndrome get that one. But it's clever, I think. And, we love to celebrate Down Syndrome around here, so why not one more day of awareness.

5 day old Charlie.

Second, March is the month in which received the news that Charlie has Down Syndrome. Yep, 5 years ago this month. March 28, 2006, to be exact.

I'll be honest, that month was a painful time for us. Charlie was 2 months old. We were dealing with the fact that he was hearing impaired, and were having our first meetings with an infant teacher for the deaf and other early intervention services for children with special needs.

Not yet 2 months old. Not yet aware of his possible diagnosis.

I was at Charlie's 2 month appointment when his pediatrician began asking some questions that seemed to come out of left field to me. A line of questioning that ended in the gentle suggestion that Charlie may have Down Syndrome, and genetic testing should be in order.

Our lives changed forever that day. A new world of awareness aroused in our hearts.

It took three weeks before the results of the genetic test, called a karyotype, were ready. It was those three weeks while we waited that were so painful to us as we cared for our baby day after day, wondering if he was who we thought he was.

"Does he, or doesn't he?"

In those weeks I scoured the Internet for information on Down Syndrome, for lists of the signs. I was particularly drawn to the pictures of babies with Down Syndrome. I studied them closely to compare each feature with my baby. Could he have it? Could my baby have Down Syndrome?

Of course, we all know what happened. Charlie has Down Syndrome. And honestly, once we knew, we set the pain aside as best we could, and moved on in love for our boy. There was adjustment, and moments of anxiety, and wondering what the future would be, but not the pain of the wondering.

I must have read about 6 books on Down Syndrome that first month after his official diagnosis. Here I have him playing with rolled towels under him to support his arms and help him bring his hands to mid-line. I become not only his mom and biggest advocate, but his round the clock developmental therapist.

So, in honor of the month of March, our family's own personal Down Syndrome Awareness Month, and also in honor of 3/21 World Down Syndrome Awareness Day, I will post a series about what life is like with a baby with Down Syndrome. And I promise to post LOTS of pictures of our sweet little guy along the way.

More here.

The Big 1/3!

2011-03-17T12:09:00.001-07:00

Yesterday our sweet baby Miles hit the 1/3-of-a-year old mark.

I can't believe how quickly 4 months can pass

When you are in the midst of loving a new-to-the-world person.

Calvin is 3!

2011-03-13T22:31:00.000-07:00

Today my funny, amazing, clever, industrious little Calvin David turned 3!

Dear Calvin,

Wow! You are 3!

Calvin, you are amazing. I just can't imagine our lives with out you.

I am so proud of you, Calvin. You are such a smart little person, so curious. I just know that you will have a profound effect on the world. I pray each day that God will give us the wisdom to parent and guide you in the way that you should go.

I am so privileged to be your mom. To hang out with you day after day. To eavesdrop on your play, and enjoy your interests. You have taught me so much about machinery, trains, and monster trucks.

I love you so much, sweety little boy. Happy Birthday!

Love,

Mommy

Tsunami: We are all Okay.

2011-03-11T19:12:00.000-08:00

Got an e-mail from my aunt wanting to know how we faired with the tsunami that hit us this morning here on the North Coast of California. We faired just fine. In fact, Arcata is cushioned from the ocean side by many cow pastures, so it was business as usual. Mostly.

School was canceled, and some businesses remained closed through the day. Coastal areas were evacuated.

There was a little damage here and there. There was devastation of a harbor an hour north in Crescent City, a town suseptable to tsunami. Thankfully they were very prepared, but I do think there were a couple fatalities.

As I told my aunt, we are VERY prepared for tsunami here. This is after the tsunami in Indonesia. The public is well educated, there are many systems in place to warn people (sirens, reverse 911 calls, radio, TV), maps that show where the tsunami areas are, and signs that tell you when you are entering or exiting a tsunami hazard zone.

If you are interested in learning more about how the Northern California Coast did with today's tsunami, check out KHUM's website. scroll down the page to see images and video.

My heart is mostly concerned with the devastation and distruction in Japan. And, I would sincerely ask for your prayers for the Grace family who are missionaries and friends of Ray's Family. The live in Sendai.

Bits of Life and Feeling Content

2011-03-06T13:57:00.000-08:00

I don't always post as regularly as I'd like. This little blog is so dear to me. It is the record of my journey as a mother. The evidence of my boys childhoods. Some kids get beautiful scrap books, my boys have a blog!

So much has been going on lately. I am so thankful for all the business. Our life is often chaotic, and by the time we have set each of our boys in their beds at the end of the day and kissed them each on their little heads, we close their door and flop on the couch in exhaustion. We look at each other like "did we just do that?" It takes almost constant motion and endless creativity to parent this age.

Have I ever said that I never knew the difference between a snowplow and a back-hoe until it became so vital to my role as a mother to two (perhaps three) mechanically impressed boys. We don't just pick up toys at the end of the day, we move them as if we are fork-lifts, cranes, and bulldozers. We are loud, and we talk in robotic voices as our machine arms lift the toys to their places on the shelf.

Calvin has been peeing in the potty this week. Some much welcomed, and maybe needed, progress from my last post. He has been taking himself, so long as we tell him not to. Yes. That's right. We say things like, "gee, I bet Calvin can't go to the potty by himself. I bet he can't push those pants down and sit on the potty. Nope! I bet he can't." So, I guess we figure things out like this as we go along, and whaaalaa! Progress is made.

***

We went to church today, and I was so blessed. We have the most amazing church. A family style, community oriented church where believer and seeker both feel comfortable to fellowship and be in the presence of Sweet Jesus. Seriously. If you are local to us, please come sometime. The more there are, the sweeter it is.

I was able to sing with Raymond for worship this morning, and if felt so good. Of course there is a never ending supply nurturing women in our church to hold Miles and look after the boys so I am able to do such a thing. I love all those who love our family.

The boys love church. They have the most darling friends. I am so blessed by all the little girls who come to church (not many boys right now). Two little girls in particular are such a salve to my soul. They play with Charlie. It has not occurred to either of them that his differentness is in anyway a hindrance to their games. Sometimes it is difficult for other children to feel automatically comfortable, so I find myself intervening in the play to explain Charlie, or help guide him in what is going on. These two little girls simply play with him. In part it works because they love to pretend to be animals, and Charlie is so great at that.

***

Our neighbors brought home made cookies over as we were picnicking on our lawn this afternoon. It is so special to live in a small little neighborhood with so many beautiful people on either side of the drive. Beautiful.

And this afternoon I am alternating between getting in some storytelling, and also snuggling a warm baby boy on my bed. I just feel content.

Charlie's Up To

2011-02-26T15:31:00.000-08:00

It's time for an update on my Charlie boy. My boy who is doing so fantastic. My boy who crawled into his car seat all by himself this morning, put his arms through his straps, and buckled himself in. You should have seen the pride beaming from that bright face of his (or the pride on mine, for that matter).

Charlie is great. January is always a busy month for Charlie. In fact, any parent of a child with special needs, both medical and educational, will tell you that the birth month is a busy one. There is the annual check-ups, which just sort of fall in or soon after that month. The IEP's, assessments, and service plans that occur in that month or the month before. Between just coming off of the Christmas break, then jumping back into school, appointments, and assessments, well, it makes February seem like 'real life' again. Everything is back to a good routine. (Well, except for Presidents week off of school, but we are back to normal again beginning Monday.)

The IEP.
We had Charlie's IEP a few weeks ago, and it went great. We decided to keep Charlie in preschool at his special education school for another year and a half. He is doing very well there, learning a lot. His speech is just coming along so well, at school and at home. He is able to understand our requests, he is able to respond and let us know his desires, needs, wants, interests. He talks in sentences of up to 4 or 5 words. Very difficult to understand, but we are getting there. He is imaginative. His fine motor is also coming along, and he can now snip with scissors all by himself. He can draw a face. He can count to 6. He is a star student in Adaptive P.E. He has his buddies at school, and now that he is a big 5 year old boy, he is allowed on the "big kid" playground at recess--we are told he LOVES it. We hope in the next year and a half he will learn even more "student like behaviors" and skills that will help him to be as independent as possible when he begins kindergarten in Fall 2012. Our hope is he will be able to mainstream with the regular student body as much as possible, and I really do believe that will be possible with an extra year to work on independence.

His medical check-up went great. He is 39 1/2 inches tall now, and 40 pounds. He is so hefty and getting so tall! He is just as healthy as can be, and we couldn't be more grateful. We scheduled an eye exam for this Spring with a specialist, and I wonder if he is going to need glasses as he works with his face awful close to his paper sometimes. We are done with checking his hearing unless a reason should arise, but this kid has never had an ear infection, and I can tell he hears me great (I have a home method I've developed to test my kids hearing, you are welcome to use this in your home as well. Just sneak up behind your child and whisper the word "chocolate". I am happy to report both of my boys hear FINE.)

One thing that was brought up at both the IEP, the doctors visit, and our meeting with our services coordinator, was potty training. Sigh. Potty training has been going on for over a year now. He still does not tell us when he needs to go potty, nor does he let us know that he is wet. He does tell us "pee pee" if he has gone poop and wants to be changed. He can go in the potty, and does so if he happens to need to go when we happen to put him on, but unless the stars align just so, he simply sits without going, or goes without sitting.

I'll be honest. I just have no idea how this potty training thing is supposed to happen. IF my kids ever learn to use the potty independently, I will be over the moon. But at the moment, it is so discouraging. We've tried the one day method. We've tried treats and rewards. We've tried talking about the reasons why the potty is the best place to go. Calvin will seem to get excited and motivated for a short time to use the potty, and then decides it is too much trouble and revert back to his pull-up. Charlie will go when Charlie will go, and that is that. Anyway, for the time being, we continue to take the boys several times a day, at natural breaks in our routine. Maybe we need to do every two hours no matter what. Or maybe we need to throw out the pull-ups and just use underwear, and rent a steam cleaner for a month. We are changing a massive amount of diapers. THREE in DIAPERS. I don't mind baby diapers, but changing poop on a 5 year old who weighs forty pounds is just, well... I want to be done. I know he will get it. I just hope by the end of this year I am only changing diapers for one child.

Okay, lets see, what else. Charlie is much easier to discipline than he was last year. He understands what we are asking/telling him now, which is HUGE. He understands that time-out/consequences are meant to teach him. We still feel like broken records, daily teaching him things. I think he really struggles with short-term memory, so a boundary or a new concept that we would only have to establish a couple times with Calvin takes tens or hundreds of times for Charlie. This is challenging, and I find it a struggle to keep on keepin' on with requiring compliance from him, or teaching something new. I am so grateful for his school which, honestly, picks up some of my slack. I mean, I didn't even know he 'could' pull up his own pants (mostly) until he stood up from potty time the other day, and pulled 'um up himself.

Hmmm.. I don't know what else to report. We are very pleased with how he is doing overall, and we keep truckin' away on the things that we have not yet achieved. I have every confidence that he is moving forward in his development in such a way that he will grow up to be a happy, involved community person. His main focus in school right now is to kind of "polish him up" to prepare him for Kindergarten. His main focus at home is to learn to use the potty, follow instructions, be safe, and care for himself (and have fun, of course!). He continues to make progress in all of these areas. He is an amazing little boy, with the gift to bring joy to our hearts.

Wow! You guys are good!

2011-02-15T12:52:00.000-08:00

Everyone who guessed which boy was which in the photos in the previous post guessed correctly. Miles is the first photo, and Calvin the second.

Took Miles to the doctor today as he has had a bad cough the last few days. He is doing well. Lungs are clear, and all that. Tomorrow he will be 3 months old, and on the scales today... 17 pounds!!!!

Who's Who?

2011-02-13T14:58:00.001-08:00

Just for fun, can you guess who is who. One of these photos is of Calvin and the other is Miles. The only reason I can tell them apart is because I took the pictures. So, what is your vote?

The Ranch

2011-02-08T22:01:00.000-08:00

Took the boys up to the Ranch Uncle Ryan and Kassi live and work at. It's in Redwood Valley. Imagine hundreds of acres of wooded mountains with the ranch house, barn, and pastures along a creek in the valley. The Ranch produces calves. The "mama's" graze through the year out in the mountains where they calve. It is so beautiful. The boys love it there, and this time they got to go on a cattle feeding chore with Uncle Ryan and Daddy in the Willys Jeep.

Slow moments like these are the ones that make me feel so rich.

A chance to touch an orphan... and Win and iPad!

2011-02-04T10:33:00.000-08:00

Rather than post the touching story of Masha and the family that is about to rescue her from immanent institutionalization, and better yet, give her the gift of having a family, I will direct you to my Internet friend Meredith Cornish's blog. Please take a minute to read the story, and learn how you can earn a chance to win and iPad just for supporting the adoption of Masha. This is why God is always telling us to give away our money, folks. So amazing things can be accomplished!

Today's Tears and iPad Giveaway

A Miles Update

2011-01-28T14:40:00.000-08:00

So there is this little tiny boy living in our home. And, he smells so fresh and is so soft and wonderful. It feels like he has always been here. His ways are familiar, and somehow, our ways and our routine is completely familiar to him as well. It's our sweet Miles.

Miles is now 10 1/2 weeks old. He is doing fantastic and growing very rapidly. His clavicle injury is completely healed, has been since he was 5 or 6 weeks, and you would never know he ever suffered at all. For a while he seemed to favor his left arm, keeping his right still and low, but that has changed, and his right arm is reaching for toys and flapping in the air just as easy and often as the left now. Gosh, it almost seems as if Someone made babies so even their bones could break to be born, and yet they would heal swiftly and completely...

Miles is BIG. Our biggest, fasted growing baby. Last week at his 2 month check-up he weighed in at 15 1/2 pounds! That is in the 99% range! He is so healthy and pink and chubby. This week he has officially grown out of 3 month clothing, and is now comfortably fitting into 6 month sizes. He eats wonderfully (which is obvious!), and also digests great. No fussy, gassy nights for this baby. It's all just too easy.

Miles is a social little guy. He smiled by three weeks, and even before that, he just looked at us so intently. One of the comments we receive again and again is about how alert he is. He chatters and gasps with delight. His favorite "word" to say is "a-goo!", and he will repeat it over and over again as he looks at you, certain that his idea is coming across crystal clear. He is eager to connect with people, and just the sweetest little thing.

He sleeps very well. Miles goes to sleep with-out too much fuss, and will sleep for hours before waking again. For nap time he will sleep up to 4 hours at a time in the afternoon, preferring shorter cat-naps in the morning and evening. At night he will typically sleep 4 or 5 hours for the first stretch, then 2 or 3 hours the rest of the night. This is SO wonderful! Charlie and Calvin were not good sleepers. I must have read every book there is on infant and toddler sleep between those two, and nothing we tried worked other than time and maturity, and for Charlie, treating his reflux. Miles just doesn't have any hang-ups about sleep. He's simply willing to do it if that is what it is time for. I am very thankful for this little gift of Miles' babyhood. We are so busy, and I am so tired, I can't imagine what it would be like if I had another anti-sleep personality on my hands.

Well, that's what Miles' is up to. He has just fallen right into step in our family. It is likely part his personality and part our feeling more experienced and confident doing this baby thing the third time around. We are having so much fun, and feeling the craziness of three very young children all at once (we have three in diapers!).

The "big" kids are doing great, too. They love to dote on the baby. Calvin is keen on knowing just what Miles is doing at any given moment, and always wants to be able to "see the baby's eyes." I think Calvin and Miles are similar in many respects, and it will be fun to see how they are different, too. Miles looks so much like Calvin did. He is social and chatty like Calvin was. And yet, he also seems more mellow and go-with-the-flow than Calvin, who is not content unless his every question is soundly answered, or his every idea justly enacted. As a baby I believe this made Calvin more fussy. He had certain ideas and desires, and was not content with things being "good enough." Miles is the kind of guy who is fine with whatever as long as things aren't going badly. (And, may I add, I don't believe one personality is preferable over the other, though one might be 'easier' for a parent in the early years. I love Calvin's curiousness, his intensity, and industriousness.)

Charlie is just so tender and confident as a big brother. He continually asks, "I hold it?" Which means he wants to hold Miles, and he is a wonderful baby holder. For those who have been fortunate enough to have Charlie sit on their lap for a melt-into-your-body kind of cuddle, well, it seems he is fixing to be equally as comfortable to sit upon. Miles relaxes into Charlie's strong little arms, and Charlie does so well at holding him securely.

Well, a Miles update was promised, and a Miles update you have been given! He is doing so well, and we are delighted to have him as our son. What a special gift he is, indeed that all of our boys are, that we should have the good grace of raising them. We learn as we go in our house, and we pray (and you can pray for us, too, if you would!) that we parent in a way that God would have us lead and guide his boys, Charlie, Calvin, and Miles.

Down Syndrome Adoption

2011-01-27T14:39:00.000-08:00

Wasn't really sure what to name this post. The title is a generic way to label something I feel so passionate about. I never thought about adoption much before Charlie was born, well, not beyond "I think that would be cool to do some day."

Two months after Charlie was born we learned he had Down Syndrome. When I think of specific events I can name that were life changing for me, that day ranks right up there is marrying Raymond, and the birth of each of our children. That day, at Charlie's 2 month check up, the doctor shared his suspicion that our boy had Down Syndrome. I can't remember exactly what day it was, March 13th 2006, I think, but it forever changed our lives.

In attempt to keep this whole long story brief ('cause, I'll be honest, it's nap time, and I don't think I have much longer before the boys are up), that day was the beginning of our Down Syndrome journey, which included an introduction to the world of special needs adoption, and learning of the plight of orphans who have Down Syndrome--children who are orphaned *because* they are born with Down Syndrome--in many counties in our world.

I came across a post by a blogging friend today that really touched my heart, and fueled my passion for these very special children. Please check it out here (and oggle her other posts about her two children who have Down Syndrome--her amazing daughter Angela, and their new son Axel, who they recently adopted from Easter Europe):
Garden of Eagen

Also, check out this Down Syndrome Adoption Ministry that Ray and I support:
Reece's Rainbow

A drive in the van.

2011-01-17T23:25:00.000-08:00

A drive in the van with my 3 Amigos goes a little something like this:

In the back left is Calvin playing 200 questions.

Miles is in the middle row, answering the best he can with coos and squeals.

On the dash is a woman's voice telling me what to do,

and in case I missed it is Charlie in the back right repeating everything she says,... "Turn right in 50 yards!"

Oh, and I'm the one driving with the silly grin on my face.

Charlie is 5!

2011-01-08T15:04:00.000-08:00

So I've been working on a slide show for Charlie's little 5th birthday party tonight (our family tradition). He's Five. Five! I can hardly believe my little tiny cupid baby is 5 years old today.

Oh Charlie. Life with you is sweet and puzzling and so full. I live for the moments that you come over to me, and shout "Kimma!" and throw your pudgy little arms around my neck. You have learned so many things in the last year. You can talk in sentences. You can tell jokes of your own invention. You imagination is vast, and your games are so inventive. You can ask for what you want. You can tell us how you feel.

Of course there are still challenges, Charlie. Things we need to work on. Like how 'bout starting to learn to use the potty in earnest this year? You can do it! I know that you can. You are clever boy. And how about let's work on helping you to put on your own clothes, okay? But you have to promise you will keep them on if I teach you to take the off.

Charlie, there are times after we've had a rough day together, and I just could not figure out what was bothering you, and your frustrations are running our home that I begin to wonder if I am doing a good job of mothering you. I feel so distant from your world sometimes. But I want you to know, I love you so much. I want to work on "getting" you better this year... But I'm still not going to let you get away with playing with what you shouldn't or only eating what you really want, just to be clear.

Ah, Buddy. What a Year! Happy Birthday, my big boy. You are so precious to me.

Love,
Mommy

Christmas, Baby, Big Brothers: An Update on it All

2011-01-04T14:17:00.001-08:00

So, it's been pretty busy, and if I've had time on the internet, it hasn't really been hands free time so I could type. But here I am, we're back to our school routine with Charlie, and Calvin and Miles are both fast asleep for nap time. Time to update the blog!

Christmas was amazing. I think one of my favorite yet as a parent. Charlie and Calvin really soaked up the reason for Christmas. We had seen a bit of a Christmas show about Santa Clause on TV, and Calvin asked Raymond where Jesus was. Ray explained that some people believe that Christmas is all about presents and that Santa is a character they believe brings the presents, and Jesus is forgotten. Calvin's reply? "That's Silly!" None-the-less we did enjoy giving gifts to one another this year, in joyful recognition of the King who came to rescue us all. Because we are so overjoyed, we give to you these gifts. A true celebration.

And of course, this year we have Miles. Another reason to be filled to the brim with happiness and contentment over our blessed little family life. He is doing so wonderfully. He is a BIG boy with the spirit of a tiny one. Such a little sweetie. He is seven weeks old today. It feels as if he has been with us always, seamlessly slipping in to our family life and routine. He never did have night and day confused, and has been our best sleeper yet, our least picky, our easiest by far. Maybe this is because we feel a confidence as parents at this point, maybe this is because he has been experiencing the ruckus that is our family life since the very first moment he became aware of his senses while still in the womb. I don't know. But life with Miles is a gem. It really is. I love this.

Charlie has adjusted to the change as if no change ever took place. He just kind of let Miles come into his life as if it were a comfortable and familiar sort of change. I guess he has 'been there done that' already as the oldest brother. He gets a little overwhelmed if Miles cries, and will promptly let us know he is crying and we need to pick him up. Yesterday as Charlie was leaving for school he made his rounds of hugs and kisses, and stopped over at Miles swing and gave him a kiss and said "Bye Sweetie!" Ah...

Calvin has found this adjustment challenging. First off he was dealing with illness on his own part, which was tough for him. It was tough for him to have his mommy in need of her own space and recovery. There have been lots of little bumps that made the transition to older-brotherhood more difficult. I can remember the first few days it was just me at home with the kids, Calvin really had a rough go. He was quite put-off by our newest little fellow. There were many fits and passive aggressive gestures. Thank goodness for the distraction of the holidays and family. He has since come to understand that we have a new normal in our house, and has made his adjustments. He is back to being my curious, happy little boy. It made me sad to see him struggle so. To be honest, he is a fantastic big brother, wanting to include Miles in his antics (as much as a 7 week old can), and looks after him. He lets me know just what baby Miles is doing at any given moment. What a good brother.

I am doing great. I feel very well. I feel like I am ready to get out jogging again, but am wondering how that will happen. I haven't even had time to work out using the Wii. There are so many things on the to do list that sort of languish day to day (sure I feel awesome, but I am TIRED!!). The dishes, the laundry. It all kind of gets done in little opportune spurts. We've decided to be gentle on ourselves about the state of our house, and settle for a state of "good enough" by the time we make it to bed most nights. Similarly we are eating real simple these days. Last night was organic tomato soup from a box, grilled cheese sandwiches, and a salad with some strange ingredients. I expect we'll find a way to get the house side of things going a bit more smoothly once our baby is a little bit less dependent. It goes by so fast.

Anyway, that is us. We've had some serious trials trying to work things out as we ALL find our how we fit into our new family dynamic, but mostly, this is joy-filled. A blessing. I look forward to this new year with a lot of excitement. My heart is full.

Can you tell who is who?

2010-12-10T21:52:00.002-08:00

We've been told, and we see ourselves, that there is a strong resemblance between Calvin as an infant and his new brother Miles. So, just for fun, can you tell who is who?

Of course the first picture is Calvin taken in the first weeks after his big arrival (not sure exactly how old). The second is Miles taken yesterday, he is 3 1/2 weeks now. By no means identical, but a little uncanny none-the-less.

Enveloped

2010-12-03T23:02:00.000-08:00

How can I describe the last 21 days? Maybe, "Whoa!" or "Phew!" or "Wowzer!"

The very short version is this:

Difficult birth that did not go as hoped or planned,
beautiful baby joins our little family,
recovery from birth that did not go as anticipated or envisioned,
very sick toddler then complicates an already emotional and physical recovery,
toddler needs lots of care (and lots of sanitizer),
baby and toddler need to be kept separate (somehow),
superstar daddy takes extra time off work to look after the needs of his family,
amazing community of friends and family completely envelop family
and make one very difficult 21 days into something more than doable...
In fact, I'd call the whole thing down right blessed.

I'll tell you a little story. This year we have been lead to pray for direction for our family. Sometime in October our conversation revisited the subject, as it often has in recent months, and Raymond told me he felt that "things are just going to start happening after the baby is born." As in, we'll find clearer direction, somehow, after his arrival.

Then was the birth of our son. A very difficult birth. And I'll confess something to you: As the main participant in that event, the one going through all the intense fear and pain, in the days immediate following, I found it difficult to want to trust in God. We've all heard the the quip "God will not give you more than you can handle." (It's really just a spin off of 1 Corinthians 10:13, and perhaps a poor one, but it's a popular sentiment.) Well, the birth we had was what we got gave, and yes, I did 'handle' it. I mean, I am here, whole, and well, but if God thinks that I can handle something like that, then to be honest, I began to feel like I did not want to entrust myself to His will. Why? Well, I'd just rather not have to 'handle' anything like that ever again.

In addition to my fragile feelings in the days following Miles arrival was a confession Ray made to me after we'd come home from the hospital. He told me he had had a vision during the labor that disturbed him. It was a vision of a menacing storm rolling in. Now, anyone might certainly be prone to such a vision during such an event, as intense as it was and the number of scary unknowns we were dealing with at the time. The thing is, Raymond has a gift beyond anything that anyone would call naturally given for these kind of things. A spiritual gift. So when Ray has a vision like this, or a feeling about something, we tend to look at each other wide eyed and consider ourselves admonished to vigilance.

Now, when you tell an already shell-shocked mommy about an impending storm... I'll tell you that I did not take that information well. Not well at all, and I really let it scare me. We were both nervous. And when Calvin came down with his illness (it was oral herpes), Ray called on our pastors, our good friends, to come over and pray with us. Peter and Gale reminded us of what Paul shares in 2 Timothy 1:7 "For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline." Perhaps Ray's vision was being used by the enemy to steal and destroy our joy, but if it was from God, then we need not be afraid of anything.

Well, I will tell you of the outcome. We did weather a storm. It could have been menacing. But, we hardly noticed, shielded as we were by our community of friends and family.

Ray's parents graciously cared for the boys and had them stay at their house as we recovered in the hospital. Our home birth midwives, and our midwife who delivered Miles at the hospital, have helped us to understand our birth and have supported us so completely, physically and emotionally, as we recover and adjust. Melisa and Nick, and Isaac and Becky hosted Calvin at their homes during the first few days after the birth while Charlie went to school. Amber and Kiko got busy organizing meals for us, and continued to do so for an additional week as we dealt with Calvin being ill. So many people volunteered to bring us meals--really awesome meals, and we've quite a few new recipes we need to try. Our dear neighbor, Chelsea, helped me with bedtime while Ray was away at a gig. My sister-in-law, Renee, came and spent an entire day with me to look after Calvin when Raymond absolutely needed to work. Ray's brother Russ took time off from his job to work in place of Raymond at Ray's job. We even had a friend give us his tithe (which rounded out our budget perfectly--perfectly!--for the month).

From every direction our family, our church, our community has surrounded us with help and food and prayer and, well, anything we needed. The storm came and went, and we have hardly felt it's severity. If anything, we have been shown what we certainly knew to be true but is now confirmed to us intimately, that our community is the kind of place we can confidently face any kind of trial, because even if we feel we cannot handle what is put before us, we don't have to face anything alone.

So, Thank You Community! Thank you so much for your care. Thank you for lifting some of the burden (and for just plain making it possible) for Raymond to care for our family and our home and all the little extra things we didn't anticipate. You brought us meals, cared for our boys, did our dishes, ran our errands, and more. Thank you for the prayers, the remedies, the phone calls, counsel, and generally lifting us up and loving us. Thank you for walking beside us during such a tender and special time as we welcomed our dear little Miles Benjamin.

And mostly, we thank you for embodying the guiding direction we've prayed so intently for all year... for helping one little family understand so clearly the place and direction that is Home.

Our Baby Boy is Here!

2010-11-16T21:23:00.000-08:00

He's here! Our son, Miles Benjamin, was born to us Tuesday morning, November 16th, at 2:04am. 8lbs 11oz, and 21 inches long. He is beautiful as can be. We, his entire family, are so in love.

Miles Benjamin is a special name to us. One hand picked for him by his daddy and mom, and one that fits our son well. "Miles", his first name, means "Mercy" in old German. The Mercy of God to give us a son at such a time that we would turn our faces toward our Father and seek Him deeper and truer than we had. And of course "Miles" makes a person think of a journey--the miles we must cover, the adventure to be had... the adventure we have had. Benjamin is a Hebrew name that means "son of my right hand". And, I think, in modern English "son of my right hand" could simply mean "my boy". Miles Benjamin is "our boy". His spirit is so sweet, and we love him very dearly.

The birth of Miles Benjamin.
It was an adventure, and did not go as "planned". I do want to share it, and really, as wild a ride as it was (and as much as I would not care to have a birth like that again...), Miles' birth was something I will forever treasure. It is good to remember and be thankful.

We had been planning a home birth with the same beautiful midwives who attended Calvin's birth at home. Both of our older boys arrived before their due date, and we had casually assumed Miles would arrive on the early side as well. Well, we waited and waited and (impatiently) waited, and finally, quite surprisingly to me (as I think I had simply come to assume he would never leave the womb) I easily slipped into labor Monday afternoon around 2pm, the 15th of November.

The labor progressed very quickly and easily to about 8cm (around 7pm), and again very easily to 10cm after my water was broken, but with a cervical lip in the way. Baby was doing well, and I was feeling well. It was odd to me how easy things really went. I felt calm and present with all that was going on. I enjoyed laboring in the boys quiet bedroom the best, and also enjoyed the birth tub set up in our kitchen. By 9pm, or was it earlier, everything was laid out and ready for us to birth our baby. Except that pesky cervical lip.

For some reason the lip would not let me labor it away. In fact, it seems my dilation was regressing a bit, and during the contractions, no less. I began to feel more and more intense, and a fear grew over me about the labor and about my ability to do what I was going to need to do to get our baby out. I felt unsafe and unsure, for no apparent reason other than fear of a repeat of my last labor that was long and painful and felt overwhelming to me at the time. I think around 9pm I began to apologetically insist that we go to the hospital. I was very scared, and my feeling at the time was that I was going to need some medication to help me deal with the labor if I was going to be able to relax enough to labor away that stubborn cervical lip and push our baby out. We briefly talked about what was and was not possible as far as pain meds at this point in labor, and what transfer might entail (i.e. relief would be limited and not immediate), and I was asked if I felt I may later regret the decision as there was really no medical need to go in. All things considered, I felt very in control of my decision and able to express that I felt I needed to go, and I would not regret it.

Next was a bustle of finding clothes for me, throwing a couple essentials into a bag, and shuffling out to the car in the dark in the throws of transition to get to the hospital. Thankfully by car the hospital is a mere 2 minutes away.

We were ushered into the birth center, and offered our choice of rooms (no other patients that night). I chose the room to which I was bracing myself in the door jam during a contraction. "Good enough," I said, and we waddled over to the bed.

Somehow I was changed from my sweats to a gown, strapped to the monitors for a brief strip, and an IV with antibiotics (due to Group B Strep status) was started. I was also given a dose of Fentanyl at my request for pain management. Fentanyl does not actually dull the pain, and I've heard makes people feel really dopey and euphoric. I did not notice that at all, what I did notice was that it helped relieve some of my intense anxiety and fear that I had been feeling--an effective strategy for me at the time, and I am thankful for having that choice available for this birth.

Soon the midwife from the clinic was there, and I began to feel like I needed to push. She found that I was again 10cm dilated with a cervical lip. She had me begin to push when needed and tried to hold back the lip so the baby could slide past. We tried this at home previously as well. It was not working.

Gosh, everything is so hazy, but what ended up happening is it soon became clear that our baby was becoming very stressed by the contractions. I was feeling an intense urge to push, but when I pushed (which was not doing much to bring him down) his heart rate would plummet. The midwife called in a local OB doctor to come help. Internal monitors for the baby and for contraction strength were placed. The baby was bobbing up and down and moving all around trying to find a way through (it is a miracle to me that babies have the wherewithal to do this), and handling contractions very poorly when I pushed--his heart rate plummeting into the 50's or 60's... even the 40's at times--so I had to pant instead, which was overwhelming and painful and felt very frantic. I was very afraid for our baby, and afraid I was not going to be able to pull off what was being asked of me in order to birth him safely. I just remember saying over and over again, please help me and I want our baby to be okay and I'm really scared. I am so thankful for my husband who sat beside me and held my hands and let me stare into his face when trying to keep myself from pushing. I am so thankful for all the good support and instruction I received during this time. There was a lot going on.

I never remember hearing that the cervical lip was gone, I just got to a point where I could not hold back any longer. The doctor wanted to start pitocin to help make contractions stronger. I refused and cried and asked that they simply take him out via c-section. I was given another dose of Fentanyl, which helped enough with the fear and hesitation that I simply began to push. I could not help it anymore. I could hear and see on the monitor how dangerously low our baby's heart rate was plummeting, but it seemed this time that he was actually moving down. Pitocin was started, and to my surprise it was a total relief to be able to have my uterus pushing as hard as I was wanting to will it to push. I pushed so incredibly hard for our baby. Finally I could feel him crowning. The midwife was pulling and I was pushing and a small staff waited for him to come out. Finally he was out! I caught just a glimpse of him before the his cord was cut and he was whisked over to the warmer where the nurse began to work on him. He was pretty blue, and they were needing to help him begin to breath, and suction him out. He was born with lots of meconium.

Well, it turned out our Miles was in respiratory distress--he just couldn't get going breathing well. The pediatrician was called in (he was born at 2 in the morning, so we ended up waking a lot of people that night). She ordered chest x-rays and blood work. The staff continued to work with him. He could breath, but not well at all. He was grunting, and not keeping his oxygen levels up when not being helped along. He was pretty frantic. But there were good signs, too, like his color was improving, and he was fighting all the commotion.

These women are our incredible home birth midwives who encouraged and supported us during our birth, and afterward as we recover.

I was so relieved that my baby was okay--not well enough to be with me, but he would be okay. So relieved to be done. My fear began to lift, though I wanted to hold my boy. The experience was so intense. The midwife stayed with me to help the placenta be born (is a placenta born, or does it just 'come out'?), and to help patch mommy back together. I was shaking fiercely from all the adrenaline, and I just lay on the bed and watched as all the different people came in to check on our boy, to draw blood, to attach electrodes, to take turns pumping the ambu bag... I could only get glimpses of him through the bodies and machinery in the room. I excused Raymond from my side, instructing him to remain with our son. What a faithful and wonderful Father, you have Miles. Raymond would speak to Miles, and Miles would look directly at him, fixing his deep blue eyes on that daddy of his. I credit Raymond with so much of how our scary start turned into something so reasonable for us all.

Finally, I needed to get up to use the restroom, and the team of folks helping our boy decided to take him for x-rays and other stuff in the nursery. When I came out of the restroom, the delivery room was empty but for the nurse in charge of caring for me. It was a mess, and seemed very lonely and sad. She helped to situate me in a wheel chair, and took me over to the nursery to see my boy.

The staff had a Cpap started on Miles, which he just fought and fought. The x-ray had been taken, and was thankfully found to have no indication of pneumonia or meconium aspiration. Soon the blood work came back, and was also normal. Other blood work was sent out to be cultured for GBS disease, but would not be back for 48 hours. Miles was fighting all that was happening to him, which was not helping his oxygen or heart rate to be normal despite the cpap. I was able to be close enough to hold his little hand and pat his chest. He was just beautiful, and reminded me so much of Calvin.

During this time in the nursery during regular vitals checks it was found that I had spiked a fever of about 103 degrees. Not a good sign with the entire situation considered. I was started on another antibiotic as I sat in my wheelchair nest to my boy. I think another hour passed as Miles was fussed with and attached to this and that, looked over with a fine tooth comb, and his daddy soothed him as best he could with his pinky finger to suck on and his strong voice speaking peaceful words. It was beginning to look like Miles would be headed to the NICU at St Joe's hospital, and I was urged to go rest so I would be able to be well enough to care for Miles at the earliest possible. I agreed. I took Raymond's phone with me to the room so I could text people for prayers. And then, our night began to turn around.

I was just out of the chair, making my way to the bed when I was told our pediatrician wanted to try one last thing. It seems Raymond was so convincing about how much Miles was being calmed by being able to suckle on his finger a bit, that the doctor decided to try to let Miles nurse to see if he would calm down enough to allow them to monitor his breathing and pulse without his being too frantic.

I was wheeled back to the nursery where I promptly opened up the front of my gown and was given my boy to hold in my arms for the first time. I tucked him inside my clothes and began to hum old and comforting hymns to my boy. I latched him on the breast, which he took to very well. Raymond stayed by our side, and began texting dear friends and family asking for middle of the night prayers. And, do you know what happened? Our boy, our Miles Benjamin, melted and calmed himself. He satisfied himself at the breast, and very quietly dozed in my arms. His oxygen levels were not perfect, but were far from needing special assistance. His grunting was not gone, but significantly diminished. And do you know what our pediatrician said? She said, "Call St. Joe's and tell them we will be able to keep this baby here. We can handle this level of care if mommy doesn't mind holding her baby to keep him calm."

I didn't mind at all.

The next couple days Miles improved and improved. He was given antibiotics "just in case", but at this point it appears his rough beginning was mainly due to a traumatic and difficult birth, and not infection. We found out during Miles last exam at the hospital he also has a fractured right clavicle (which was apparent on the chest x-ray, but had not been told to us by the pediatrician at the time--guess we had bigger problems then). Finding that out made a lot of sense to us as he is very fussy when being moved about, and cries in pain when you touch the area or move his right arm. Just one more thing we are now being mindful of as we recover at home.

I have also improved, and have no further signs of infection very thankfully. I am extremely sore, though. My arm muscles, back muscles, stomach muscles are all very stiff and sore. I've also a few stitches, and sore veins from so much IV medication. What a work that was.

Miles is asleep next to me on my bed right now. Such a peaceful and beautiful boy. My heart is just full of compassion for this little fellow who endured such a journey with us. In the end all indications seem to be that he simply had a difficult time finding his way into my pelvis, and out the other side. He is a couple ounces larger than Calvin was, who also had a long difficult labor, but an exceedingly more easy time pushing him out. Miles struggled much. I don't know if the two could be related to my anatomy, or were independently difficult for completely different reasons. Both boys were said to have acynclitism--which means they were crooked during their births.

Edited 1/12/11: After further conversation I found out the OB and hospital midwife feel Miles' struggle during labor (as evidenced by the heart decels) and his respiratory distress, and also my fever, were due to chorioamnionitis, an infection in the uterus. They feel it was most likely caused by GBS bacteria, as I was GBS+. They feel our quick recovery was likely because we had antibiotics during the last part of labor, and for a couple days afterward, and also due to our excellent overall health that allowed us to bounce back quickly. Miles' difficulty finding his way through my pelvis, and his collar bone injury, are another issue separate from the infection. I've talked at length with all my midwives about all of these things, and we suspect my pelvis is oval shaped at the inlet, and perhaps in a way that our babies need to enter the pelvis in a posterior position.

The view from here.

I don't regret my decision to transfer to the hospital... obviously. We would have ended up there one way or another with the danger signs Miles was showing. It was good to have gotten there before he began to struggle, I think, so the OB doctor could be called and things were able to begin to be trouble-shooted and managed from the start. We have come to think of the reason for our transfer as being "Mother's Intuition." I certainly could not have predicted the events of the night, especially after having such an easy time laboring up until that darn cervical lip refused to go away, all I knew at the time was I was too fearful to stay at home.

THE CREDITS
I am grateful for the tender hand of Jesus that was ever present, to guide mommy to the hospital before anything became emergent, to give our birth team and my husband the right words and touch to support me through to the end. Thankful for our home birth midwives who supported me as we labored at home, and also in my decision to transfer. Who continued to help me through the difficult birth with their assurance and affirming presence, and who help me to feel validated as a mommy who simply acted in what was best for herself and her boy. I am so in love with my husband who endured with me and did his honest best to help me to feel safe and to keep struggling for our boy. Thankful for my sister-in-law, Renee who did so much of the "dirty work" helping us to set up, clean up, get ready, take pictures, offer support, and continues to offer anything she can give. I am thankful for the hospital birth attendants who helped get our baby out safe, and who helped him to get going in life doing all those necessary things people do (like breath). Gosh, it's funny, you wouldn't think an experience like this would have so much redemption, but I feel oddly built up by our journey. I feel assured of my ability to mother, I feel deeply bonded to my new son. I feel grateful on so many levels, and most of all, so deeply in wonder of the Hand of God that keeps us and watches over us. Our Abba Father whose great wisdom it was to give our family this little guy, Miles Benjamin, and who carried us and him as he came into the world.

Well, if you made it through all of that, then congratulations to you. It almost feels like too big of a tale to tell... for me anyways. The experience was so much bigger than I could ever think I could make it through. I thought that of Calvin's birth, and now with this one... gosh. It really is the strength of Jesus that helps us to do anything set before us, and not of our own, so long as we believe.

While We Wait...

2010-11-13T13:22:00.000-08:00

We have no firm middle name for this baby, but at this point are leaning toward "Late-for-Dinner". Yes, we are still waiting for our sweet bundle to decide to arrive. Officially, he is a week overdue. According to when I was *sure* he would come, it's been more like a month. A month of waking up every day thinking "Darn. No Baby." (As if I would simply find him in our bed in the morning.) I admit, after having two boys so graciously arrive before their due dates, this one is, hmmm... refining my patience. Oh, but he will be worth it.

Calvin putting on the fetoscope to check the baby's heart rate at our home visit a few weeks ago.

You know, we have been blessed to an extreme with our boys, our pregnancies, our births, and the support for women and families in our, well, "Hippy" Northern California Town. This will be our second home birth, and we have always only received support for our family decision. I feel so cared for and respected. I feel so much confidence in the hands that are helping us to bring our son into our arms. Our home birth midwives are excellent practitioners who care very well for my body, for our family as a whole, for our emotional well being. Whenever we have an issue we are able to dial them up directly and receive on the spot counsel about what to do. When I was having preterm labor worries, I was so grateful to have their advice and care so at-the-ready. And now as we navigate all the feelings that come with unexpectedly having to wait so long for our babe, they are there to walk us through it, and to encourage us greatly. We are very blessed indeed.

I've also felt frustration with the end of this pregnancy. Lots of small discomforts. My parents came two weeks ago to help after I had injured the front joint in my pelvis. I was having a hard time walking, let alone caring for the boys. Their availability and help was invaluable. And between all their service to our family, giving me a break from "kid-wrangling" and chores, and a timely visit to the chiropractor, I have all but healed from the injury. Still not taking any long hikes (as I would like in order to jostle this content baby out), but I can walk, and I can get dressed, and I can clean house, and play with the boys again. Unfortunately, baby did not come during the time they could be here, and now they have left. I feel sad they did not get to meet him, yet hoping they will be able to make it up for his debut as "Baby Jesus" during the Christmas Service at church. :)

Charlie's turn with the fetoscope.

I've been thinking a lot about waiting. About what it means to "be on the alert, for you do not know which day your Lord is coming." (Matt24:42) (Pregnancy is full of little object lessons for faith.) Of course for a woman busy making her "nest", being prepared--on alert--means keeping the house clean, organizing everything (and I mean everything!) in order to make space for a new little person, preparing ones heart for the work of labor and birth, and preparing the family for coming adjustments. For a Christian, being prepared is also full of physical work and heart work. We work on our hearts, seeking God's will daily, and then we live it out in our lives as we work with out hands to serve God, our families, our neighbors, our communities. It has been interesting to so obviously be continually preparing for our son's arrival (which involves a lot of repetition with a longer wait: re-preparing the home as things fall out of order, re-preparing my heart as it drifts toward disappointment or anxiety), and to wonder each day as I nest and re-nest how I am also making myself prepared for the day of the LORD. It is a continual work before us.

Calvin helping the midwife take Mommy's blood pressure.

Of course, some of my waiting has not been so gracefully filled of heavenly thought. Some days I simply awake to a feeling of depression. I am still pregnant. Surely, I will be pregnant forever... Please, Lord, please let this baby come soon! And so forth. The baby area in our bedroom has been ready for so long I am having to dust it off as it continues to go unused. It's felt like a long wait, and I do wonder just how much longer. Sometimes I'm at peace. And sometimes peace feels so far from me.

Anyway, these are just a few of the rambly things on my mind as we wait it out. Really this is a win/win situation. No matter when he comes, we are having a baby! Such a beautiful blessing for us all. He WILL come, and at this point we can safely say it will likely be soon.

I love this boy so much!

2010-11-07T15:09:00.001-08:00

And this boy, too!!!

Happy Due Date to Me

2010-11-06T23:15:00.000-07:00

I've accomplished a personal record today--I've been pregnant the longest I've ever been! (Charlie arrived 10 days before, and Calvin 3 days before their due dates.)

I'm looking a lot like this these days...

Nope, that is not a basket ball under there. That is our little boy who is content to cook a little longer. We all thought for sure I was headed for an early delivery. It has been a bit of an emotional challenge, not to mention a physical challenge. But, we are enjoying time with a gracious Nana and Papa who have come to town despite no new baby, to help a very pregnant and uncomfy mommy out.

When will he come? Well, it is impossible to tell, but we continue to pray for his health and safety and an easy, joyous arrival.

Pumpkin Patch!

2010-10-25T14:22:00.000-07:00

The children have been waiting for the big pumpkin patch visit for a long time. The Calendar we have in the kitchen has pictures of last year's pumpkin patch excursion, and Charlie has been pointing it out daily, looking longingly at the photos and saying "Punkin Patch?!!"

Calvin atop the Hey Maze.

Well, we finally had our day at the "Punkin Patch" weekend before last, and it was great. It always is! The Punkin Patch has a Hey Maze for young children, which the boys run through (or on top of) with abandon. There are concessions, pony rides, face painting... all this from a small family owned farm. We usually skip all the money-costing things and focus on the hey maze and the... dun! dun! dun!... TRACTOR RIDE out to the pumpkin fields. Oh boy! The kids are SO excited about that tractor ride. You just can't get Calvin to wipe that silly grin off his face.

Charlie and Daddy on the Hey Ride.

This year we went with our new friends from church, L and her awesome boys, J and J, who are just a bit older than our boys. Uncle Russ and Auntie Renee also came, and we went to their house afterward for some yummy home-made nachos, and a chance to play with their dog, the ever so popular, Jefe.

Hmm... How 'bout this one?

Or this one...

The kids ran all around in the pumpkin fields, tripping over vines, digging in the dirt, and searching for the dirtiest pumpkins they could find in order to be able to give them a "pumpkin bath" later on. Our boys had a particularly difficult time finding a satisfying pumpkin. We tried all shapes and sizes. In the end, mommy and daddy ended up with two classic round pumpkins, while Charlie chose a tiny, yellow pumpkin about the size of a walnut, and Calvin chose a small, green, oblong pumpkin with a pointy bottom. All came home very satisfied.

My Boys!

Hint: If you click on this photo it will enlarge and you can just see Charlie's tiny pumpkin in his hand, and you can see how filthy Calvin is from the adventure. Filthy and oh so happy!

The Things He Says

2010-10-24T15:02:00.000-07:00

I post these little gems on facebook all the time, but need to put them here too for family who don't FB. Little things that Calvin says. He is such a precious, funny boy. I love him so much.

Last week while riding in the car:
Calvin: I have a question, Daddy.
Daddy: Okay, what is your question?
Calvin: It is a question about Trucks.
Daddy: Okay, what do you want to know about trucks?
Calvin: How do you say "Vroom! Vroom!" in Spanish?

A few nights ago during our bedtime prayer time:
Daddy: And, did you know that God is always with us, all the time, even when you are scared?
Calvin: Yeah... I'm so proud of Him!

The BIG Down Syndrome Awareness Post for October

2010-10-12T14:11:00.002-07:00

It's Down Syndrome Awareness Month in October. Little known fact. I have many bloggy friends who have dutifully devoted themselves to blogging every single day about Down Syndrome in the month of October. Please scroll down to the Blog List and check a few out. As for me, well, I confess that there is so much on my mind other than Down Syndrome this month (say, a new little family member who is getting ready to burst onto the scene). But, I did not want the month to slip by without a Down Syndrome post.

Charlie. One day old.

What shall I say about Down Syndrome. You know, we did not know Charlie had Down Syndrome until we had already enjoyed him for 2 months. Those two months had stress of their own: a difficult birth recovery (after a very easy birth, go figure), a difficult start to our breastfeeding journey (it is hard to learn, and more so when your baby doesn't seem too concerned with the fact that he should eat from time to time), a bunch of hearing specialist appointments (in which I was asked to nurse him to sleep for testing--yeah, no pressure there!), learning Charlie was hearing impaired, Ray returning to work the same week in which Charlie was born. It was a sweet time for us, but also a whirlwind of activity and stress, so you can imagine how my jaw hit the floor at our 8 week check-up when the doctor said to me he thought we should test Charlie for Down Syndrome. Oh boy. That was quite a day.

That is where we started out on this journey, and I have such a tender spot in my heart for new parents just hearing the news. Hearing the news, reading the books, and wondering what life is going to be like. Wondering what life would have been like.

Baby C and Mommy.

I'm not going to revisit every place along the path that we have been so far. There have been highs where I just felt like my heart would burst. There have also been lows where I really have struggled to just be okay with Down Syndrome and the ways it can complicate life.

Presently Down Syndrome and I are at place of peace. Charlie's sweet, round face that smiles so big at me in the morning. His low little voice greeting me with "Kim-ma!" as he wraps his chubby arms around my leg. I love this boy.

Daddy and Charlie playing some music together.

There are challenges to parenting Charlie, like attachment (on my part, not his. I think he feels good with things.). Charlie is a cuddly boy (the best cuddles ever!), but he certainly does not seek attachment like Calvin does--you know, in a typical way. He does not compete for attention with his brother, which may be part of the problem, and something I am still adjusting to after Calvin's birth. Also, Charlie does not call me Mommy, he calls me "Kim-ma", which is fine and sweet, but sometimes makes me feel more distant to him. So, I work on attachment and bonding deliberately with him now, and it is good... at least for me. I make sure to sit by him more often, be the one to hold his hand when we are out and about, have patience with him when he is having a sensitive day, spend one-on-one time with him whenever possible, remind him to call me "mama". These deliberate actions have helped me to feel more connected to him, which in turn helps me to enjoy him more for who he is. Quirks and all.

Other challenges are simply his slow development, which means we are giving him a higher level of care for longer, and that can be a very physical job when accounting for his size and hypotonia (at 40 pounds we still need to change his diapers, dress him, lift him into his car seat, help him up and down stairs, etc.). It is also difficult to communicate at times, though within our household we do pretty good getting our points across, however that is accomplished, both us and him. We worry about him running off, and have to be VERY diligent to make sure he does not wander away.

Big C and Little C. An awesome big brother.

I've spent a great deal of time lately studying sensory issues in hopes to understand some of Charlie's quirks--like why he chews on everything. He is driven to chew, and we have a multitude of "chewies" about the house for him to satisfy his need without ruining toys or blistering his hands. He just needs that oral stimulation--he also loves crunchy and spicy foods for the same reason. He gets overwhelmed by certain noises, and some days are better than others with this, but often Calvin will have to put off playing with certain noisy instruments until times Charlie is away.

Then, there are parts to raising Charlie that have caused many permanent smile lines to form on our faces. You should see Charlie dance! Yesterday he put on his groove in front of the entire church, pulling some amazing, gymnastic dance moves to the song "Great Big God." Charlie tells a pretty mean knock-knock joke, which most often ends in an impressive dragon roar. I wish everyone had the chance to enjoy his imagination as he involves you in one of his games. You may not understand just what is going on because of the language barrier, but you know it must be fantastic, and you feel so special to have been included.

Posing with Grandpa after the 2009 Buddy Walk.

Charlie is a tender boy, so gentle and giving to those who are smaller than he. If you want your baby looked after and doted on, call on Charlie to sit with her. He will offer toys and soft pats and kisses.

Our life is so amazing with our boys. I love to watch Charlie and Calvin pal around in the yard at dusk, wondering at times who is who. Charlie is generous to his brother, and will share a toy when first asked. He loves to climb into Calvin's crib in the morning to share a game or a cuddle (or a tackle... ahem). They have dance parties together, and put on imaginative music shows using various props as their guitars, banjo's, basses, and drums. Charlie will often tell me he is playing "bass guitar." Truth be told, he excels most at keeping a steady rhythm, and I am excited to see him bud as a percussionist in time. He is developing an on-key singing voice as well. My favorite song to hear him sing is "Happy Birthday" as he performs it with such abandon.

My boy is getting so big!

With mommy and daddy he can be very stubborn, but we are learning he understands so much, and if you look at him with a stern face and sign "obey" he will get that you mean business. We have learned that he is capable of understanding discipline (a new development), and we are able to hold him accountable for his actions in ways we never were really able to get across to him before this summer and fall. Not only does he understand his actions and consequences, he also understands forgiveness. He seeks and gives forgiveness with an ease that I only wish I had (and wish Calvin had too! Sheesh.). He has become very good at his evening clean-up job of putting all the vehicles in their "garage" (the bottom toy shelf). He is working on memorizing some Bible verses, and will recite portions of them, but has not yet mastered the entire verse alone. He loves to draw with us, and pretends to write words, spelling them out loud as he scribbles.

All of these things are part of our family life. Ray and I look at each other sometimes and think, "Can you believe we have a boy with Down Syndrome?" I mean, we are under-the-radar kind of people to whom significant things don't seem to happen. It is just kind of wild, and shocking, and wonderful all at once. And, gosh, it is a challenging journey we are on, and I think it is fine to be at the mountain top and in the valley at different places along the way. Point is, we love our boy so deeply, no matter whether Down Syndrome is stumping us or blessing us at the moment (though we count our trials as blessings, to be honest... or at least we try).

Brothers!

So, there is some Awareness for you. Don't forget to check out what others have written this month to bring Awareness to Down Syndrome. And also, check out the Reece's Rainbow blog and organization, and considering sponsoring one of the beautiful children during their upcoming "Christmas Angel Tree Project".

My Grandma Collins

2010-10-07T20:48:00.000-07:00

My beautiful Grandmother Alice Collins passed away on Tuesday. She would have been 100 years old on the 21st.

It is hard to describe just who my Grandma was to me. An inspiration to be sure. I would not describe her as tender or gentle, though she was both of those at their proper moment. I would not describe her as overly humble, though a genuine humility permeated her living. I would not describe her as feisty really, though she was so in all the right amounts, and as comedically as possible to put you at ease. Grandma was full of so much grace. Grace is how I will remember her. Grace and gratitude.

Her grace was available to anyone, and grace and gratefulness was how she lived her life. As my dad said, "No one could not-like Grandma Collins. You couldn't help but love her."

Now, I did not know my Grandma when she was younger, raising her children, being a wife. I only knew her as a woman so gracefully aging. Through knee replacements, minor illnesses, a couple scares, but an overall strong constitution, and a body slowly, slowly growing so old (and she would often agree that she was quite old!). She did all of this in perfect balance. The grace to accept her capability and need, the control to be in charge of her well-being as she first knew it was time to sell her home and move on to places where she could receive increasing assistance. Somehow always submitting with a cheerful heart to time and ability. Somehow maintaining a joy and gratitude in life as one by one her family and friends passed on before her. Always open to the prospect of friendship and the opportunity to treat others with kindness--even if that was limited to demeanor and expression in her later years.

Her life was full. And she did it with grace. She received it with gratitude.

For me, the end of her life has a couple regrets. Just the simple regret that time and distance made visiting an impossibility, or at least more difficult that I was willing to hurdle. Her hard of hearing, and my prolonged absence, made phone calls difficult as she seemed not quite able to figure out which grandchild I was. Perhaps I was too sensitive, and really, I know she would have told me so. Told me to not worry so much about an 'old lady'. Still, I would wonder when I heard an update of her if I was slowly slipping from her memory. I don't know, but I sure have thought of her a lot. And, I am glad of the promise that I will see her again in heaven, and that when I do I will not need to say the words "you are an inspiration to me," because she will see it so simply in my face.

I miss her. I have missed her. And I am so happy for her to be Home now.

If it's not one thing...

2010-10-02T20:01:00.000-07:00

My beautiful Charlie is broken out in a nasty, itchy rash. Poor Bub.

This school year has been a little rough on his health, so far. Well, a little rough on all of our health.

He ended the Summer session with a nasty cold that lasted all of August. This cold cleared up in the first week of school or so and we enjoyed about 4 days of a clear nose and well feeling boy. Then he came down with a new virus. Fever that lasted a day, runny nose back in force, a cough. That was probably during the second week of school.

Well, the nose continued to run, but he was back in school because that nose seive is a "Down Syndrome Thing", and what are we to do but wait it out. Of course he then presents with another fever, and throws up a couple times. I think this was week three or so. Runny Nose ever present (and folks, by "runny" I mean we are running for tissues, because thick, green snot drips from his face all. day. long.).

So, he recovers from the fever and tummy illness quickly. (Nose still going!) Then in week four, or were we to five by now, he develops a rash on his bum. I hear second hand staph is going around the preschool classrooms, so I take him in to have it checked. Oh yes, it is staph, and by the time we have our appointment one of the spots is on it's way to becoming a nasty boil. Oh, he also has impetigo (staph) on his nose and chin. Nice.

Now I am at my wits end, and beginning to wonder if school is having issues with keeping the classrooms clean, hand washing, etc. Or maybe it is just beginning of the year immunity shock. Or maybe something else is going on.

Anyway, the staph clears up pretty quickly, no boils form (thank goodness!), and now that we're in the clear, I am even able to nab a spot on the clinic's busy schedule to get the boys flu vaccines yesterday. They were both good sports and got goodie bags to-boot. (We are being very proactive, and even ahead of schedule this fall with a tiny newborn about to join us soon. I feel accomplished!)

Now to this morning. I go into the boys room to get them up. I un-zip Charlie's jammies and find he is COVERED in a rash. Big, deep, sigh. It is a good thing I have low blood pressure, or I would be having serious health issues myself. Turns out the rash is drug related, as in an allergic reaction from the Sulfa based antibiotic he was just finishing up. I guess I would have thought he would develop a reaction right away, but the NP I spoke to on the phone said the reaction is often delayed. Thank goodness it is not worse than the rash (which is bad... really bad and itchy. poor Bub). His airway is blessedly unaffected. Of course the antibiotics did dry up his snot issue. Go figure.

Sigh... again.

Now what? Well, we're going to try to ride this out a few more weeks, but if our boy keeps getting sick (and I should say, he went to school three of four days this week and has not come down with any new illnesses... just the allergic reaction... so that is an improvement, believe it or not) than I don't know what we are going to do. I suppose we will have the doctor run blood tests to see if something is out of whack. I suppose we may consider building his immune system up naturally (he takes great quality vitamins, but maybe there is something more to do). Once we have our baby we will have plenty of breast milk on our hands, and I'm thinking I will pump to supplement Charlie (I'm serious, I think it could help... and it would be cheap). I suppose we may consult the school to see what we can do to try to minimize his exposure to germs more than is done now. And really, all of this is just me getting ahead of myself at this point. It's just been a rough September, and now we are covered in itchy bumps, head to toe, back and front. That immune system needs to buck-up a bit, and the sooner the better with tiny Mr. Robinson number 3 due to arrive very soon.

Any suggestions? How can we help our sweet boy stay healthy?

A School Update

2010-09-22T22:28:00.000-07:00

Just had to post this e-mail I got from Charlie's teacher this evening. He is doing so well.

Charlie had a lots of fun today. He and ----- and staff played “Ring Around the Rosey” at recess—I think they would have played all day—but staff did get a little tired. Very cute! Charlie has been playing a lot with the big trucks on playground and rode in the car as well.

During circle, we used our dog puppets to bark the alphabet when we sang, “There’s a Dog in the School”. Charlie also picked using Lummi Sticks when it was his turn to choose activity and we did “Tap Your Sticks” and Charlie is able to follow directions such as tap end to end, put them behind you etc. Generally, he just follows directions and enjoys activities.

He’s definitely not shy about talking. We worked on his “I Like Pets” book and he told me what each animal was without problem—of course!

At lunch, I asked him what he wanted to eat first? “Grapes” without hesitation. At lunch and snack, I often given students choice of milk, chocolate milk, or juice. Do you feel comfortable with that—I know some people like to restrict milk products and thought it might be a good idea to check with you.

We had APE yesterday—scooter boards, running, walking, jumping, galloping, and tip toeing around the circle. Lots of fun! At the end, Linda asked who wanted to do a log roll—Charlie raised his hand and got up and laid on the mat ready to go. He is quite the APE star!

Hope things are going well at home. Isn’t it almost time for the new baby—are you all ready?

Talk to you soon.

C.