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Monday, March 17, 2014

It's Not Just About the Future Moms




I finally clicked on that “Dear Future Mom” link that keeps popping up in my Facebook feed.

Yeah, it had me sobbing.  The variety of accents and languages was beautiful.  The message that it’s going to be hard, but it’s also going to be good, hit home.  But I’m still not interested in sharing that link on my Facebook page.

Because they weren’t making that video for me – the already-mom of a child with Down syndrome.  And they weren’t making that video for my son’s friends and acquaintances and teachers and family.  That video was aimed at the future-mom, the mom with the prenatal diagnosis, the mom who is deciding whether to keep her child or have an abortion.

A tear-jerking video aimed at mothers in one tiny little window – that space between hearing a diagnosis and making a decision.  That’s a very short-sighted look at what it means to bring a kid with Down syndrome into the world.  Like too much pro-life propaganda, it focuses too much on just getting the kid born.

I believe that the best way to help parents with prenatal diagnosis make their own, informed, decision is to fight for the inclusion of acceptance of people with all sorts of disabilities throughout their lives.

Because if you’ve known people with intellectual disabilities – if you’ve shared school rooms and workplaces and bus seats and conversations and friendships – well then of course you’re not going to decide to abort a baby with Down syndrome.  This decision doesn’t have to start and end with a mother’s surprise, grief, and guilt.  The decision to welcome people with Down syndrome into our communities starts long before conception and lasts throughout the child's life.

Thursday, January 30, 2014

Bedtime Musings on Infinity


Tonight's bedtime reading inspired the question "Who is God?"  And as we talked through some possible answers, Toby happily transitioned into questions about "How big is outer space?" and "What is the biggest number?"

Through it all, he had this great big grin on his face, and he was snuggled up in his blankets looking oh-so-cozy and content.

This is a little boy who knows he is a tiny speck in the universe.  Call it God, call it numbers, either way it is big and he is small.  And he seems to find that both awesome and comforting.

Thursday, January 23, 2014

More Animated GIFs

This is way too much fun.


Seriously, Google, you are not helping my habit of taking way to many of the exact same shot.


Carry on.  Nothing to see here but babies making faces at the camera.

Wednesday, January 22, 2014

One Year

One year old.  Wow.  Time, it is flying.


You might have noticed that we missed your 11 month update.  Y'know, I think I remember doing the same with Toby, back on another blog, 4 years ago.  The first baby months are full of getting-to-know each other, new surprised every month.  And then, sometime around a year, the surprises slow a bit.  There are fewer firsts to marvel at, fewer milestones to note, fewer changes as we all settle in.  You're part of our everyday now, kid.  You bring some great sparks, but mostly we just can't imagine our family before we were 4.


The last two months, of course, did include lots of firsts.  First Christmas, and all the other surrounding holidays.  First day at daycare--just a few hours at a friend's in-home setup, but it still feels like a big step.  First blizzards and snow days--we've had lots of time this month with our whole family snowed in.  After our Christmas travels I think you have now officially met all of the members of our family.

You're learning how to insert yourself into our conversations more and more--waving hello and bye-bye to everyone, cheering and waving with excitement, accidentally making the sign for "papa" and then grinning from ear to ear when the motion makes us say his name.

Oh, and straws!  We've been practicing with a straw, and you're getting it!  This is huge because: 1) You are awesome and it's fun to watch you try new things.  And 2) Once you figure out how to drink some milk through a straw then I can spend more than two hours at a time away from you!  You've got a distinct technique with the straw that is, um, noticeably influenced by your time spent breastfeeding.  Whatever, dude, independence is awesome, for both of us.


I'm a bit embarrassed to admit that your favorite toy these days is, well, cords.  You're remarkably adapt at finding them, especially since you're not scooting or crawling or in any way reliably mobile yet.  At Christmas, your favorite part was the ribbon, which is kind of like a cord, only without the electricity.  And at your birthday party your favorite part was the tissue paper--which is kind of gross when you drool on it, but at least it is not a choking hazard.

Yesterday we celebrated with cake and family and boxes full of tissue paper.  The look on your face when we started singing "Happy Birthday" was priceless--you were concerned and confused by the strange cultural custom that had overtaken your family.  You tasted some cake, but mostly you liked squishing it between your fingers.  You're stuck in the middle of a cold, so there was a bit more snot than anyone really wants on their birthday, but overall you seemed pleased with the attention.  And the tissue paper.


Toby surprised me with his excitement about your birthday.  All day he was making cards for you--and that's saying something considering the fight we usually have getting him to make one obligatory card when he attends friends' birthday parties.  He made you a little picture album and recorded his voice on each page.  The idea was that he would make up a story or tell you something about the people in the pictures.  But every time he turned on the microphone he just started in on the "I love you Max, and I love you very much, and I love playing with you..." and by the time he got around to narrating the pictures the album would beep and the recording time would be up.

Happy Birthday, One Year Old!  We all love you very much!

Tuesday, January 21, 2014

Happy Birthday!


Oh, I'll write something tomorrow.  We're having too much fun with this guy today.


Also, these new photo mashups are the best thing to come out of Google in a long time.


Monday, January 20, 2014

One Year Ago


Tomorrow, our baby turns one.

 
One year ago today I was hoping that Max would stay put until morning so that the planned C-section would go as planned.  We were finishing up getting the house ready for my parents to come and stay with Toby.  We were holding Toby close, with tears in our eyes, waiting to drop him off with friends overnight so that we could be at the hospital in the wee hours of the morning.

I was worried about the unpleasantness of surgery and recovery.  I wasn’t worried about the baby.  I had a rough time with Toby’s birth (see necessary planned C-section, above), but Toby was fine through it all.  I was planning for more of the same.

I was excited to finally meet our son.  I was anticipating holding him in my arms.  (I was thrilled that pregnancy would soon be over!)

This time last year, I didn’t really know anything about Down syndrome.

When I see the pictures of those last few weeks of my pregnancy I feel… I don’t know.  There’s an innocence, or an ignorance, in those photos.  I look at that person and I know that she has no idea how hard she’s going to get slammed in just a few weeks.

All children surprise their parents.  All parents have moments when they look at their children and think, well, this is not what I expected.  But most don’t have those moments in those first few newborn hours.

I’m pissed that Max’s birth and diagnosis will always be entwined.  I’m pissed that I have to remember any sadness on the anniversary of his birth.

It is oh-so-possible to absolutely and totally love my son, every little bit of who he is.  It is possible to accept the challenges that come with who he is, and to truly not want to change a thing about him.

And it is also possible, at the same time, to remember that there was a time when I didn’t even imagine that his particular set of challenges would be a part of my life.

Friday, January 10, 2014

Stretching the Imagination



Well, hello there blog!  I remember you!


I’m pretty sure that one of my pet-peeves is folks apologizing for not updating their blogs.  Let’s just say I’ve been uninspired, shall we?  And uncertain of what to write.  More posts about Down syndrome?  Random day to day bits about what we’re crafting and cooking and making out of snow?  Rants about politics (oh, Indiana, at least I always have something to gripe about living here)?  Descriptions of what one does with two boys inside for FIVE snow days in a row?

We’re going a little stir crazy around here.

And then, last night it hit me.  Why I read blogs, and why I might as well keep writing.

I read blogs because they expand my imagination of what daily life can be.

Several years back I discovered knitting blogs.  They were my gateway into the craft.  Instead of reading a book about how to knit-into-the-back-loop, or following a logical order of projects moving from scarf to hat to socks to sweater, I started following the projects—and the lives—of knitters with more experience.  They gave me inspiration and confidence, and as I read along I picked up skills and advice, and soon I was teaching knitting classes at our local shop.

More than the technical aspects of the craft, I saw how folks incorporated their creative side into their day-to-day life.  Maybe they knit in front of the TV or on their commute.  Maybe they made matching sweaters for their nieces or toys for their kids or socks for their grandmas.

I read how knitters found joy in their practice and took pride in their finished products.

Getting to know knitters, virtual knitters, helped me imagine myself as a knitter.  And pretty soon I was a knitter.


Wha’d’ya know, that’s the same reason I keep browsing through the blogs of families impacted by Down syndrome.  There are books with information and doctors and therapists with advice—but I come to blogs to widen my imagination.  To see some of the possibilities of what our life can look like in the coming years.

And my blog here?  I doesn’t need to do anything more than that.  I don’t need to have advice or answers, I don’t need to plan out my content, I don’t need to be engaging or poignant or thoughtful or funny every day.

Maybe someone’s imagination will be sparked by what they read.  Or maybe no one will read it, and I’ll just have some satisfaction in knowing that I’ve been using my own imagination to write our own little story.