Milestones

When we first heard the words Down syndrome, the delays in early milestones were the farthest thing from my mind.  I didn’t even know that early physical delays were a part of Down syndrome.  Several doctors mentioned getting us signed up for early intervention services, a few made mysterious comments about how, “it might take a bit longer, but he will walk.”  Wait, what?  Of course he will walk.  I’d never met any adults, or children for that matter, with Down syndrome who don’t walk.  I wasn’t thinking about crawling or walking or rolling over or head control.  I was thinking about the cognitive disabilities that usually accompany Trisomy 21, and I was thinking about their long term impact on me.

So, I’m surprised how randomly the pain of missing milestones hits me.  Most days it doesn’t.  Most days I don’t even think about it.  But then I pick up a newsletter from my church about teaching my 8 month old about Jesus, and it mentions that “babies this age” are using their pincer grasp. Or I see pictures in my due-date-message-board of babies Max’s age who are sitting up or crawling or pulling to stand.  And most days it rolls right off, I know in my head why Max is moving at a different pace.  But every now and then I get sideswiped.  The reference to “normal” comes out of nowhere, and it’s like a hit to the stomach.

Maybe it’s because, all of a sudden, I remember that we’re not just talking about whose baby sits first.  We’re talking about a lifetime of moving on a different timeline.  A timeline that I want to love and respect, but that I am still learning to understand.

To those of you with babies the same age (hi Lauren!) please don’t stop bragging about your baby’s new skills.  They are wonderful, they deserve it!  I don’t want to be cut off from your joy because it is sometimes uncomfortable.  And I’m finding that the best medicine for my worries is exposure.  The more happy babies I see sitting and rolling, and holding their heads up without a bob—the more comfortable I am with my own little guy doing things in his own time.

Welcoming in Baptism

Last weekend we celebrated Max’s baptism.

I understand the reasoning behind adult baptisms.  And hey, it was good enough for Jesus, and everyone in the early church, so you don’t have to convince me of its merits.  But y’know what?  I love, love, love the idea of baptizing babies.  There’s no greater reminder, in my mind, of how we are loved and included unconditionally—both by God and by the church.

The two are equally important to me as I’ve watched my sons’ baptisms.  As amazing as is to contemplate God’s extravagant love, I find the community aspect even more inspiring.

Just in case I hadn’t had all the self-sufficiency knocked out of me the first time I birthed a child, Max’s arrival reminded me all over again that I can’t do this alone.  Christer and I can’t do this alone.  We were counting on our family and friends to help us with the transition from 3 to 4 – keeping Toby, bringing us food, sending their love.  We weren’t planning on needing extra prayers for a baby in the NICU, needing extra time from our pastors as we worried in the hospital, needing extra visits from friends while we waited for test results, needing extra support from family when we tried to care for two boys for the two weeks that one was stuck in the hospital.

I suppose that, in theory, I believe that God will support us through whatever challenges Max throws our way.  But in a very concrete way I know that our church will care for Max and care for us as he grows up.

And so, we watched the pastor take him from our arms and walk with him through the crowd—a piece of the ritual that pulls on my heart with even more force than the sprinkling itself.  Your family is bigger than our household, little man.  I can’t tell the future—I don’t know if you will find your own friends and your own faith in this community or in another.  But I have faith in the promises made for you.  You will not be alone as you grow into this world.

Caught Staring

It seems pretty universal among the parents we’ve met—having a kid with Down syndrome means dealing with curious onlookers.

I haven’t noticed any staring yet.  Babies are already so funny looking—cute, but kind of funny looking—that it’s hard to notice those telltale Down syndrome features.  Often Max is hiding under the stroller’s canopy, or sleepy and drooling on a shoulder, so folks don’t see him very well.

But I’ve caught myself staring.  At the state fair a few weeks back we were in line next to another family with a kid with Down syndrome—cute little girl who was almost 3.  The girl approached us first, pointing at Max repeatedly and excitedly.  I was fascinated by her.  She was adorable, and clearly enamored with Max.  And yes, I found myself looking and wondering about Max’s future.  I smiled at her and clumsily started talking to the parents.  They were giving one-word answers.  I asked how old she was, and they answered with a explanatory sigh, “she’s small for her age.”  And that was when I realized that they hadn’t noticed that Max had Down syndrome, too.  So I turned the stroller so they could see him better, and introduced him.

Of course, then the tone changed.  We chatted a bit as our kids went through the exhibit.  We’re members of the club, it seems.  But I’m not sure my curiosity is any purer than anyone else’s.  Just like all the other staring eyes, I’m trying to figure out something that I still don’t understand.

I got the stink-eye from a mom earlier this summer for taking a second look at her teenage son.  Again, Max was asleep, facing away from them.  We were in a crowd, and gone before I could say anything—not that I would have known what to say if I’d had the chance.

I’m writing this to remind future-me that I once stared, too. 

Someday, it’s inevitable, I’ll write a post about how I’m tired of the staring.  I’ll write that it’s not fair that Max’s struggles are written so clearly on his face when the rest of us get to keep our difficulties secret.

I can’t guarantee that this old reminder will make me any more patient or gracious or polite when I catch someone staring at my son.  But hopefully it will at least make me humble, and remind me that I was there once, too.

Seven Months

Another month already? Or, um, another month already a week ago? Sigh. This is what parenting is all about, watching you speed along while I drag behind.

But enough about me.  On to you and your seven-months-plus-some self.

I'm sure you've hit some new milestone or another this month, but more than anything I'm noticing how good you're getting at letting us know when you're happy.  Bigger smiles, single-syllable bursts of laughter, arms wide and waving, and oh, that tongue!  When the tongue is out we know you are pleased.  

You've been eating some solids, of course.  We're all experimenting, trying to find foods that encourage you to grab and play and taste.  You're pretty good at sucking your thumb while holding a chunk of zucchini, you love munching on cantaloupe in your little mesh feeder, and you'll smack away at spoonfuls of sweet potato puree all day long.  Even better than the food, though, you're now joining us at the table in your high chair.  It's fun to have you as an active participant in family meals.

I'm not sure where this month went.  This last month of summer has been busy and lazy all at once.  You've spent a lot of time with Papa while I've been writing.  We seem to be running out of steam for the big summer adventures, but we're still fitting in swimming pools and picnics and trips to the park and the zoo.  There's not as much on the calendar, but every day is full.

You are Oh So Close to sitting independently.  For now, you still need a little support, but it's fun to watch what you get into when you're sitting up.  This month you've gotten more interested in toys.  They don't just go straight for your mouth--you wave them around and bang them and watch how they move.

It's rough work charming us all day long.  Luckily, you're up to the task.

State Fair

I have been writing way too much elsewhere, and not posting enough here, so I think it's time for a post full of photos.  Last week we drove down to the Indiana State Fair, and did all sorts of fun fair things:

Cute piggy smiles:

Fake farm chores:

Big tractors and ice cream treats:

The World's Largest Popcorn Ball:

Cheese sculptor at work making a cheese sculpture:

3D zoetrope.  My favorite exhibit.  I don't know what it had to do with anything else at the fair, but it was so fun to watch:

Finally, a souvenir green-screen photo.  From an exhibit that taught us that genetically modified soybeans are not scary, with the help of a scary gigantic mutant soybean:

A Week Together

A friend’s funeral was held today.  A friend who was old enough to have lived a full life, but still too young to be taken by cancer.  With boys in tow and appointments to make I couldn’t attend the funeral, but I’ve been thinking about her today.  She was always a welcoming face at church, and I was touched by the way she stayed on top of news about my family.  She had the patience and wisdom to know how to deal with me through Christian education meetings.  I looked up to her.  I’ll miss her.

I heard the news in church last Sunday.  And just as I felt the sting of the news pass through my heart and come out in a sigh—well, just then Max decided to spit up and blow a raspberry right at the same time.

That morning Max and I were sitting with two friends.  A grade-schooler, related to none of us, decided 10 minutes into the service to move over and sit with us so that she could make faces at Max.  We were a mismatched pew.

But there we were, giggling at Max’s mess while trying to make note of the visitation and funeral times.  And trying to process the news of our friend’s death.  There’s healing in that spit-soaked rag, it seems.

This week another friend in our congregation had a baby, and the moms from church are pulling together a schedule to bring her family meals.  I’m watching her post pictures on Facebook, and getting excited to watch our kiddos grow up together.  And I’m already getting nostalgic remembering those newborn days, just six months ago.

In the coming week a couple at our church will be getting married.  They’ve been a committed couple since 1985.  They’ve raised a daughter.  They’re traveling to New York to make it official.  It’s a shame that they can’t get married here in Indiana, but it is still a joy to hear of their celebration.

Age and sickness and death, new life and cute babies, kids growing in community, weddings and solid commitments.  Friends surrounding each other, trying to figure out our way through it all, joining in prayer.  This is our church.  The bad stuff hits hard, but it hits us together, and we’ll grieve and remember together.  And when we share the good stuff, we keep the faith that there will be enough joy to go around.

The Big Latch On

Yesterday Max and I attended the Big Latch On.  It’s a national movement to bring together nursing mamas and babies for a day of celebrating nursing.  At 10:30 in the morning babies and toddlers all over the country latched on—there were 27 of us here in Fort Wayne and 14,536 all together.

We met at the library, and as things were finishing up a news camera showed up.  He set up the camera and started taping the group of ladies & babies I was sitting with.  I'm sure he got some cute shots.  And then he asked us to talk a little about why we came to the event today.  I'm kind of ashamed to say that we retreated into nervous giggles.  With the camera in my face I couldn't think straight, and nothing came out, and thankfully another mama stepped in and was able to be more articulate.  But now that it's over, of course, I've figured out what I want to say.  So, here's what I meant to say:

I’m here today because I knew some friends would be here.  I’m here because I have to feed a baby anyway, and it’s a rather repetitive job.  It’s much nicer to do it with friends.

I’m here today because we’re taught that showing skin is shameful, and at the same time as we’re told that we need to show our breasts so that men will find us attractive.  I’m here because breastfeeding, especially in public, throws a wrench in that whole line of thinking.  It turns out, boobs weren’t made for men at all.

I’m here because I feed my baby in public quite frequently.  I’ve got a busy 4-year old to entertain and groceries to buy, and we aren’t just going to stay home all day, so baby gets fed whenever and wherever baby gets hungry.  Usually it’s as simple as that, it’s not a part of any political statement.  But as much as I hate to admit it, I feel a little bit uncomfortable every time.  So I’m here to remind myself to be proud that I’m a milk-making mama.

I’m here because entering the world of special needs means that I’ve learned a whole new list of ways that breastfeeding is a marvelous thing.  The nutrition is great, of course.  But it also builds up those muscles in the mouth, the ones needed for eating and speech later.  Even the act of flipping the baby to switch sides helps the baby develop symmetrically and learn about body awareness across the midline.  It’s fascinating stuff.  I’m here because Max has some struggles ahead of him, and all of these little benefits just might add up to make his road a little smoother.

I’m here because of the mamas who want to be here who aren’t here.  I’m here for the babies in the NICU who couldn’t latch properly.  I’m here for the kids with Down syndrome I’ve met in town who spent too much of their first months away from their homes in a hospital bed or who ate most of their early food through tubes.  I’m here for the mamas who tried to nurse, and whose babies are growing and thriving on formula.

I’m here because this is one part of caring for Max that is going exactly to plan.  I didn’t plan to read Down syndrome blogs after bedtime or to devour Down syndrome memoirs while nursing.  I didn’t plan to clear a space off our rug once a week for PT or to go to support groups.  I didn’t plan to organize trips to special clinics and I sure didn’t plan to even think about words like “leukemia,” or to worry as we waited for Max’s blood tests to come back (he’s fine by the way.) 

I’m here because it’s nice to spend a morning focused on Max without saying the “D” word.  It was good to complain about sore nipples and compare notes about crazy doctors and share tips about biting babies.

I’m here because no matter how crazy everything else gets, every few hours I get to cuddle up with my baby.  I’m here because of that big, tongue-out, wide mouth smile that comes at me whenever my shirt goes up.

So, yeah, Channel 15?  That’s what I meant to say.