Thursday, May 30, 2013

Thoughts On the Road

We are kicking off the summer with a road trip, and we’re visiting my parents right now.  I’ve got nothing coherent to say, so here are a few observations from our trip.

  • Old school toys are a win all around.  Here’s Toby on a tricycle that’s meeting its third generation.
  • Traveling with a four year old and a four month old isn’t all that bad.  One’s just getting old enough to understand how to entertain himself in the car.  The other is too young to care that we’re in the car all day.  “Beezus and Ramona” on CD helps—Christer and I enjoy it as much as Toby.  Especially since Ramona’s antics remind us very much of our son.
  • We do a lot of laundry.  I packed 5 days worth of clothing for an 8 day trip, thinking we’d do laundry once.  All y’all with kids can stop laughing now.
  • Sight-seeing with a four year old and a four month old works pretty well, too.  Most of my pictures of our excursions are on my other camera, and I left its cord at home, so maybe I’ll share more when we get back. 
  • I don’t want to get into a whole plot summary—but let’s just say that if you want to talk to your kids about disabilities and inclusion, you could do worse than starting with a viewing of Wreck it Ralph.  One of the main characters is a “glitch,” a little girl who doesn’t quite fit into her video game world.  Her behavior is erratic, the other characters aren’t quite sure how to relate to her, and there is a worry that if the video game players see her that they’ll think the game is broken and unplug the game all together.  Considering I just wrote up a post about how Down syndrome is like adding a bit of code to a computer game, well, let’s just say it got me a little chokey.
  • And while I'm giving out media recommendations, check out the Incorrigible Children of Ashton Place books by Maryrose Wood.  They’re aimed at young teens, but they’re pretty good for filling hours of nursing.  I just finished the third book and now I have to wait until December for the fourth to come out. 
  • Grandparents who want to soak up grandkid time are the greatest.  It’s so sweet watching them cuddle Max and go along with Toby’s pretend play.  Also, it’s pretty sweet to have some free time to sleep in, nap, read, knit and write.

Wednesday, May 29, 2013

DS 101 - The Basics

Six months ago all I knew about Down syndrome came from some mostly-forgotten high school biology classes and Glee.  I’ve spent an awful lot of time in the past few months reading while nursing, and slowly learning the shorthand & assumptions of this club we’ve joined.  I'm still learning, but I'm finding that summarizing and writing it down helps me process and understand.  And I’ve gotten quite a few questions from friends (and probably a few more questions have gone unasked), so I thought I’d put together a few posts about the basics of Down syndrome.

Down syndrome, it turns out, works an awful lot like a Game Genie.  Back in the day, did you have a Game Genie for your Nintendo?  It was a device that fit between the game cartridge and the console.  Before the game started up, it gave you a chance to type in about six codes.  Each code was a series of numbers and letters that would go in and alter a line of the game’s computer code.  The code might give you unlimited lives or make the baddies move more slowly.  Codes could be found in books and on the back of game boxes and, of course, in Nintendo Power magazine.  Or—and this is how my friends and I mostly used the device—you could make up your own codes and play through the game trying to figure out what changed.

Sometimes the change made game play harder—the clock would move faster or the power-ups wouldn’t work.  Sometimes the changes were benign—once we managed to turn the game’s sky purple.  Sometimes we would play through the whole game and never figure out what change had occurred.

Down syndrome works just like that.  See, when a man and a woman love each other very much, they each contribute 23 chromosomes to their offspring.  Each of the 23 pair up, so that the baby’s first cell, and every cell that grows after that, has a total of 46 chromosomes.  But sometimes the mom’s or dad’s (okay, usually the mom’s) original chromosomes don’t separate the way they should.  All of the pairs split up except for one, and that one hangs along for the ride.  When the egg is fertilized that first cell, and every cell that divides from it, has 47 chromosomes.

The chromosome pairs are numbered in order from longest to shortest.  For some reason, I find it fascinating that chromosomes come in different lengths.  I must have missed that day in high school biology.  Anyways, they are numbered in order, but 23 gets the last number because it’s the pair that determines sex—the one that is either an X or a Y.  And then whoever named the pairs measured 21 and 22 wrong.  So that is how the shortest pair ended up with the name 21.  When a person has 3 copies of chromosome 21, they have Down syndrome—also clinically called Trisomy 21.

You can have extras of other chromosomes, or extra parts of other chromosomes.  Some of these cause other rare genetic syndromes.  But usually, if a complete longer chromosome comes along for the ride, the fetus doesn’t even make it to term.  It’s really something of a miracle, and a testament to the human body’s amazing adaptability, that a baby with an extra set of code can survive at all.

Just like that Nintendo Game Genie, the extra code scrambles things a bit.  And since everyone’s genes are a bit different, we don’t know exactly where the extra chromosome’s influence will show up.  Sometimes the effects are benign.  People with Down syndrome often have only one crease across their palm (Max doesn’t, he has three), and they often have a larger space between their first two toes (Max does have this marker.)  Some changes alter the game play a bit.  People with the extra chromosome tend to have shorter limbs in relation to their torso, for example, and that will affect the way Max learns to crawl and walk, although it shouldn’t affect how he walks once he learns.  And some changes make the game more difficult.

Just like with any other baby, we won’t really know where Max’s strengths and challenges lie until he gets older.  The down side to having a label so soon is that we got hit with a lot of worry right when he was first born, and Max will always have folks see his diagnosis first before they get to know him.  Having a diagnosis so early can be useful, though.  It means we qualify for early intervention services from day one.  It means we know what medical conditions to screen for at certain ages.  And since Down syndrome is the most common chromosomal condition, there is a lot of research on what sort of therapies and teaching may work well for him.  For example, people with Down syndrome tend to be visual learners—so our therapists will likely work with us to teach him skills using pictures and sight words alongside verbal instructions.

And, of course, there are still 46 other chromosomes at play. So, Max has still inherited a possibility of my high cholesterol or Christer’s allergies.  He might end up with my artistic interests or Christer’s talent for numbers.  He’s just got a few extra lines of code mixed in with what we were expecting.

Thursday, May 23, 2013

We're Going to the Zoo, Zoo, Zoo

This is an in-between week--the space between Christer's classes ending and his summer research beginning.  It's also the space between preschool ending and summer activities starting up around town.  So it's been a slow, relaxing week of family time, and catching up on laundry, and throwing in a few extras like going to the zoo.  Really, there's not much to explain or write about.  Just one cute boy running around checking out the paths and exhibits (and sometimes looking briefly at the animals), and one boy riding along happily in the stroller.

Toby can lick his paws like a hyena.

Our tour guide, pointing out the sights.

Well now, this is just a shameless photo op.

Max says, "Don't forget about the one warm and cozy in the stroller!"

Wednesday, May 22, 2013

Procrastination, with Frappuccino

No cute baby pictures today, no musings on parenting, no mention of therapies or doctors.  Just a photo of my frappuccino at my favorite outdoor patio get-away-and-write spot.

I really enjoy curriculum writing assignments with strict boundaries.  They combine all the best parts of ministry with children and all the best things about filling out tax forms.  Yes, I'm serious, I enjoy both of those.  I’ve spent two summers writing church curriculum, and I’ve learned that I really love projects where I have to fit my ideas and theology and creativity into someone else’s format.  Last summer, however, the project I had been working for wrapped up, and I was pregnant, and we were moving, and no writing happened.  So now, as I am stretching out of the newborn hibernation, I’m ready to write again.

This afternoon I’m completing/starting several sample assignments in hopes of landing another curriculum job.  It’s a long shot—I’m confident in my writing, but I know that the economy is tight and these writing jobs are going to go first to people who already have more experience.  And even if I don’t get the job I am having fun trying to think of little exercises that will fit into the curriculum’s structure.  Writing “max 30 words” is way harder than writing a whole page.

But, as you’ll notice, I haven’t finished writing my samples yet.  I have, however, procrastinated away a few minutes of my precious no-kid time in order to add a little something to the blog. 

Until the day I can say I’m an employed writer I can at least sit at my laptop at Starbucks, with a laptop bag instead of a diaper bag, and call myself a freelancer.

Monday, May 20, 2013

At the Doctor

Max is a noisy little baby.  He sputters and honks as he breathes, and generally sounds like he’s got a terrible cold.  Two times doctors looked at him when he was little (ha!  I love saying “when he was little” about a 4 month old baby!) and agreed that he did have a cold and that was the cause of the noise.  But as we took him to Down syndrome support group playtimes and therapy appointments, folks who knew kids with Down syndrome all said they’d heard this noise before, it’s called tracheomalacia.  It’s caused by a mix of low muscle tone and small pipes, and it’s harmless, if somewhat alarming sounding, and should go away sometime in his first year or two.

So, today was a well baby check, and I was hoping to get this diagnosis (especially the “harmless” part) verified by a real doctor.  I told her how it got worse when he was excited or after he ate and better when he was relaxed.  The noise disappears when he’s asleep altogether.  She spent a long time listening to his lungs.  She agreed that it was probably okay, but wanted to check his oxygen saturation and get a chest X-ray just in case.  And I’ll admit that I kind of smiled and nodded, because I’m not thrilled about giving a kid an X-ray if it’s not necessary, but I don’t want to miss anything, either.

So the nurse came in to check his oxygen.  And she couldn’t get the machine to work.  And we tried another sensor, and another, and then another machine, and then another nurse gave it a try.  And then the nurses tried the sensors on their own fingers and couldn’t get a reading.  Max was getting hungry, because I had it all timed out, of course, so that he’d be hungry right at the time he’d be getting his shots.  So they gave up for the time being, gave him his shots, and let us nurse.  Poor kiddo—there was screaming, but soon enough he was sucking away, and then sleeping.

The doctor returned to try to get an oxygen reading one more time.  She had about as much luck with the sensors as the nurses had.  So, although this was presented as just-to-make-sure, I’m now getting anxious awaiting some sort of a number.  We never did get a good reading.  As Max slept in my arms, the doctor watched his quiet, peaceful breathing.  “You know,” she said, “a chest X-ray is probably overkill.  If you don’t want to, you don’t need to mess with it.”  I don’t mind the messing with, but I’d rather not shoot my baby up with X-rays.  So, no reading, no X-ray, everything’s fine, go home now.

I’m left a bit confused.  For the most part I’m fine with how this all turned out—I didn’t think there was anything wrong with him and we seem to have convinced the doctor of that, too.  On this particular issue I’m feeling good and settled, I’m not thinking we need a second opinion or anything.  But I’m left feeling uneasy because I know there are going to be so many more doctor visits like this.  And I’m feeling completely unprepared to be a medical advocate.

I'm trying to remember that we're not alone in this, there's a lot of help for us along the way.  Sometime this summer we're planning a trip to a Down syndrome clinic, to learn more about Max's health.  We've got a network of therapists and other families that can share their stories along the way.  And right now we have a healthy, if noisy, little boy who now weights 14 lbs 7 oz and is 25 inches long.  We do make big babies around here!

Sunday, May 19, 2013

Weekending at Home

Whew, what a weekend!  In the past three days all or part of our family have finished up preschool for the year, attended three local festivals (Fiber, Cherry Blossoms, and YMCA, in that order), shopped at our farmer's market, stocked up on clothes & games for little boys at a dozen yard sales, grilled out on the porch, worshiped and celebrated at church, attended a graduation ceremony, and finished it all off with a picnic with Christer's friends from work.

Last year Christer, Toby and I had the chance to pack everything up and try something new.  While Christer was on sabbatical, we headed off to Washington, DC, so that we could try out living in a big city and he could try out some science policy work.  It was a great year--worth the craziness of uprooting and finding a renter for our house and having the credit card company call us up for a month after each move to make sure that yes, really, we were buying groceries in a new town.  We toured embassies and had playdates at the Smithsonian and there was an endless supply of new restaurants to try.

When we left, more than a few friends quizzed us on our intentions.  What if we liked it better there?  Sure, we said it was for a year, but how could we come back to Indiana after all that?  Easily, it turns out.

I knew that I didn't want to have a baby in DC.  I wanted to be home, in my own house, around my own friends and support network when I was dealing with those first crazy newborn days.  (Also, morning sickness and public transportation do not mix well.)

When we returned, I was four months pregnant.  I was past the worst of the morning sickness, but I was glad to finish off the pregnancy at home, among friends.  As Max's arrival grew closer, I couldn't imagine getting ready for a baby anywhere else.  Friends offered to watch Toby, arranged meals, and generally showered our family with love and excitement.  When Max ended up in the NICU, their support became essential.  As we worried about our baby, alone in his hospital bed, and waited for test results, our friends rallied.  My church mama friends showed up at the hospital to pray with us and share in parts of the journey that we weren't ready to make public yet.  E-mails, facebook messages, and notecards flooded in.  Friends, and friends-of-friends, contacted us with stories of their brother, their sister, their aunt, their child, who had Down syndrome.  I didn't reply to everyone at the time--and I'll never be able to say enough thank yous to everyone who held us in their thoughts in those first few days.

All this to say that although I wouldn't say no to a Moroccan restaurant, or at the very least a bakery that makes pop-tarts, I love weekends like this when there are more events going on in Fort Wayne than we have time to check out.  Even better, here we aren't just sight-seeing.  We're running into friends, watching our kids play together, and watching Max get passed around by the folks who will be loving him and looking out for him for years.

Max approves.

Thursday, May 16, 2013

We Skipped Spring...

...and jumped right into summer. 

This is how we've spent the past couple afternoons.

Toby splashing, always with a running commentary.  Max and I happily sitting in the shade and watching the show.  I'm kind of caught off guard by how independent Toby can be sometimes.  He filled the pool by himself while I was feeding Max, and even did some trouble shooting to figure out to put the chairs up against the side when it was falling down.  (He still needed me to carry the chairs over, though.)

Water from the hose is cold, even when it's nearly 90 degrees out.  So Toby never sat down in the pool, he just put his feet in.  He still managed to entertain himself for an hour and a half, and get soaking wet.

Max even got to dip his toes in for a first swim.  He likes baths, but this water was too, too cold.  But I'm looking forward to seeing his reaction to the (slightly warmer) pool in just a few weeks.

And tonight I washed dirt, not just dried spit-up but real dirt, out of the creases under my chubby baby's neck.

Parenting is way easier outside.

Wednesday, May 15, 2013

Baby Sit-Ups

Max started every-other-week physical therapy about a month ago.  He also sees a speech therapist once a month.  It sounds like he’ll have a full schedule of weekly physical therapy, speech therapy, and occupational therapy by the time he turns one.  Most of this comes to us through First Steps—a federally mandated, state run early intervention service.  First Steps therapists come to our home for sessions, and the service is free for us.  It’s really an incredible set up, I am thankful for the help we’re getting from folks who know the challenges ahead of Max, and I have found our sessions so far to be fun and fascinating.  Child development really is amazing.  But I’m still processing how to be the parent I want to be in the middle of this systematic approach to development.

Like today at the YMCA playground.  It’s a great little space for Toby to get out some of that nonstop-four-year-old-energy, and the floor is padded with mats, so it’s a good place for Max to hang out and get in some tummy time on his blanket.  Today we were the only ones there, so Max and I had the ground level to ourselves, and we started practicing his PT exercises.  Some baby sit ups, some rolling over, and a whole lot of kisses and tickles.

And then another mom and her son show up.

And I realize how silly I look.

“Aw,” says other-mom, “How cute.  How old is he?”  Three months old.  Three months old, and I am coaching my baby on how to turn over.  He’s not even old enough to be “behind,” and yet here I am helping his body do something it’s not quite ready to do, correcting the way he holds his head, and getting all excited when he flexes his itty-bitty neck muscles.  Heck, why don’t we start teaching him to play the violin while we’re at it?

This is when I’m not sure what to say.  I don’t want to introduce my kid with a diagnosis.  Today I went with “He’s in physical therapy, and this is something we’re working on.”  That seemed a way to explain what I was doing and put some sort of medical weight behind it

But really, thinking about it, I’m fairly certain the other-mom didn’t care.  My explanation was all about me.  “I’m not the kind of mom who keeps track of whose baby rolls over first,” I wanted to say, “I’m only doing this because the doctor said we must.”

And when I get beyond myself, there's a deeper worry--about what it will be like for Max, growing up, to be constantly prodded to be someone he isn’t quite yet.

I understand that these early intervention steps are useful and necessary.  I’m just still working out a way of thinking about them.

Tuesday, May 14, 2013

More Family Photos

And since we're talking about family resemblance, here are a few more photos for your entertainment.  Max has some crazy hair, but when it's wet in the bath it disappears, and I'm reminded of my bald baby Toby.  The top photo is Toby, the middle is wet Max, and the last picture is dry Max.

Monday, May 13, 2013

Family Resemblance

Toby on left, Christer at the same age on the right.

At the 20 week ultrasound, the tech snuck us a fancy 4D picture.  Instead of the outline of baby’s silhouette, we saw his little face, waving his hand at us.  I immediately remembered my older son’s baby face.  I told anyone who would look at the little printout, “He looks just like his brother.”

At birth the doctor lifted Max up over the curtain, and I got the same quick view of him that I got of his newborn brother.  Red and wiggly, face scrunched up, and then he was gone.  I was curious to meet this new little life, but also reminded of that other birth four years earlier.  “He looks just like his brother,” I said proudly, “but he has more hair.”

In the days following Max’s birth and diagnosis, we had such wonderful support.  Afterwards, several friends confided that they didn’t know what to say, that they were worried they would say the wrong thing.  Quite honestly, at that point, my emotions were all over the place, and nearly every comment we got—from “Congratulations, he’s adorable” to “I’m so sorry”—spoke to something I was feeling.

But if you want to know the best thing anyone said, it was the early intervention evaluators who came to the house a month later.  They looked at Max, looked at Toby’s picture on the wall, and declared, “This must be his brother, I can see the resemblance.”

Max shares physical characteristics with the other people out there with 47 chromosomes.  But he is also ours.  He is a part of our family, and he shares characteristics with us.  He’s got blue eyes, like the rest of us, and the same sandy hair that will probably get darker as he ages.  He’ll pick up Christer’s grin or my wrinkled brow, and just the other day he gave me a grimace that he certainly learned from his brother.  I don’t want to erase the evidence of Down syndrome from Max’s face, but I do want for him to be seen for all of the other things that he is and will be—starting with being seen as a member of our family.

Before Max was born, Christer posted the picture above on Facebook.  It generated lots of chatter.  The resemblance is striking, and amusing.  I look at the picture now with some trepidation – I wonder if we’ll ever be able to put Max’s pictures up to ours, or to others in our family, and comment on the resemblance.  And so I spent some time with Toby’s baby photos.  I was proud (and yes, a bit relieved) to see that my babies look an awful lot alike.  Max is many things, but first of all, he is ours.

Toby on the left, Max on the right.

Saturday, May 11, 2013

Here We Go Again

I love blank books.  Sketch books, journals, even paper calendars.  And I’ve got quite a collection of them, each started with a few pages, and then abandoned.

Confession:  I am the same way with blogs.  I’m not going to tell you how many blogs I’ve started and abandoned around the internets.

Over a year since my last post, I’ve been feeling the bloggy-bug again.  I’ve got stuff in my head, and I want to write it down.  And because I’ve started a new chapter of life, I really considered starting up another new blog.  I could have a new title and make a new header and focus the content on the things I want to write about right now.

Three months ago we welcomed our second son into the world.  This is Max.

Max has Down Syndrome.  Hearing those words changed everything and changed nothing.  There was a rush of emotions in those first days, of course.  And all the questions and worries were quickly eclipsed by the love for and from our tiny little boy.  And now, as we’re moving from the sleepless newborn days into a new-normal of life with two little boys, I’m feeling together enough to try to get some things out of my head and into words.

The strange thing is, even though I am now officially a Special Needs Parent, I’m still awfully new to it.  Aside from the first few weeks in the NICU and the therapist who stops by every other week, Max’s babyhood looks pretty much like Toby’s.  So much of my reaction, so much of what I want to write down, is the terribly na├»ve ramblings of my hopes and fears for the future.

I’m fairly certain that I will look back over these words in a few years and laugh at myself.  I’ll laugh at my fears for things that turned out just fine, and I’ll laugh at my certainty about things that I was oh-so-wrong about.  But I want to write it all down anyways.

There’s a lot I don’t know about Down Syndrome yet.  There’s even more I don’t yet know about Max.  And everything I am learning about this journey is encased in the larger story that includes Toby and Christer, my own strengths and insecurities, my faith, my own enjoyment of hearing myself type as I sort it all out.

So I’m not starting a new blog, I’m jumping back into this old one.  And for a while I’ll probably be writing a lot about our new little bundle and all the things he makes me think about.  But there will also be posts about our outings, my craftings, and, of course, all of the things that my older son makes me think about as well.

Because as much as new chapters feel like beginnings, no story really starts on a blank page.