Friday, March 21, 2014

The Things We Can't Say

The light was on in Lincoln's room as I got ready to leave the house this morning.  I could hear him happily talking to himself, babbling really, and I knew I would find him sitting in the little chair at his low play table, holding a Batman figurine in one hand and Green Lantern in the other.  When I opened the door, sure enough, there he was at his table, in his dragon pajamas with his action figures clutched tight in his hands.  His cry of "Mom!" was cut short by his detection of the ultimate precious in my arms.  It came out kind of like, "Maaah...iPad!"

The early morning sighting of his dear family is easily trumped by the early morning sighting of the beloved iPad, that wondrous screen of games, cartoons, and lest we forget, the gleeful magic that is Talking Ginger.

Linc followed me downstairs (okay, to be honest, he followed the iPad downstairs) and began his negotiations.  I told him, "I have to leave, buddy, give me a kiss."  And he responded, "No. Want iPad."

"Nice try," I said, "You're not getting the iPad.  Why don't you give me a hug and a kiss before I leave?"

"How 'bout... show?" he suggested, pointing to the television.

I held firm.  "How about a kiss?"

We both won.  He wrapped his arms around my leg, and I planted a few kisses on his forehead.  And as I left for work, the soundtrack of "Jake and the Neverland Pirates" was already blaring in the background.

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Six years into the adventure of raising a child with Down syndrome, I have been all over the map with how much to share and how much to hold close.  I would love to think that things are getting better for people like my son.  With the rise of autism diagnoses, with the tide turning against using the word retard casually, with more and more stories making their way into social media about people with special needs thriving and suceeding, it seems like maybe, just maybe we are making progress.

But then I read an inspirational article about a person with Down syndrome and, before I catch myself, my eyes stray down to the comments.  And I read the most horrible, hateful, things.  Things I can't get out of my head for weeks after.  Or, I visit my favorite pregnancy board and read how many mothers, women who are also pregnant and love to talk about their ultrasounds and their nursery plans and their commitment to breastfeeding, I read these same women unapologetically announcing that they would not hesitate to terminate their pregnancy over a diagnosis of Down syndrome.

I read these kinds of things, and I realize the progress is slow, so slow sometimes I wonder if we are going backwards.

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For six years, we have been the parents of a child with Down syndrome, and sometimes it can be easy to feel like we have to be the poster children for team Down syndrome, always smiling, always reminding everyone how much we love our son and how much he has enriched our life.  Today is World Down Syndrome Day, and it can be easy for me to feel like I'm supposed to write something inspirational about our son, post a badge on Facebook, and wear a plastic bracelet that says 3-21 so people will ask me the significance of the number and give me a chance to wax poetic about the incredible experience of knowing something with Down syndrome.

And the thing is, I do like to wax poetic about raising Lincoln, and I do believe he has enriched our lives in ways that a typical child just wouldn't have done.  But that's also not the whole story.  Because part of the experience of raising a child with Down syndrome (and, I imagine, a child with any other special needs) is trying to walk the balancing act of being team Down syndrome and also being brave enough to talk about the large and complex issues that come along with this experience.  Sometimes we look around us and come to the conclusion that the world can't handle the nuance of doing something hard and discouraging and confusing that is also amazing and inspiring and worth all the blood, sweat, and tears you pour into it.

Sometimes we're not sure we are allowed to both advocate for our son's right to live and be treated equally and allowed to say that raising him can sometimes be daunting, exhausting and lonely.  Because we see how people like our son are talked about and treated in the world, there are things we don't feel like we can say, sometimes not even to ourselves.

We know that he can be extra work in a class setting, so when we pick up our son from school or from church and hear that he's developed another challenging behavior, we just apologize and promise to work on it at home.  We don't say that we've already been working on it for months, that we have exhausted every strategy we've come up with and the vast majority of the articles and child-rearing books other parents use for advice are written for typical children.  We don't say that we have no idea what to try next.  We just smile and apologize that he was a disruption and promise to work on it at home.

We don't say how much we ask ourselves where his delays end and our deficits in parenting begin, but you can bet we tend to blame more of it on our deficits than the other way around because no one wants to admit their child is struggling, is unable to master something, even when you know it's to be expected.  We worry that his constant vocalizations are disruptive to other people.  Of course we work on being quiet in places where talking is not appropriate.  But what we don't say is that we have listened to his vocalizations ourselves non-stop for almost six years, that we get frustrated with the noise, too, and frankly if we knew how to get him to stop making those sounds, we would have done it already.

We are tired, but we worry about asking people to watch him.  We worry that he will not behave, that he will not be able to express what he wants and will get frustrated, that he will decide it's time to wrestle with your children or that he will rub snot on your couch or that he will simply sneak out your front door and wander into the street.  We know he's more work to babysit than a typical 6 year old.  We know some people may feel uncomfortable around a child who is different, even if they know and love us and wish they didn't feel that way.

We also know that, statistically, some people we know will have terminated a child with special needs. We know that others, though they didn't have to make that choice, would have been in the termination camp if they were faced with the decision. We know some people around us every day will be of the opinion that it was cruel of us to bring our son into the world, will think maybe he shouldn't be here in the first place, and may treat him badly because of that feeling.

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Today is World Down Syndrome Day, and I've been thinking about what that means for us and what it would look like to advocate for Lincoln without feeling that we need to be plastic or scripted.  What would it mean to celebrate his life, to be team Down syndrome all the way and be open about the joy of raising a child with Down syndrome, while also being free to admit that sometimes this is hard?

See, I don't think the message needs to be that raising a child with a little something special is always going be sunshine and rainbows.  Sometimes we feel like pulling our hair out, and we cry, and we wonder if we are doing enough.  And other days, it's sunshine and rainbows for miles.  And butterflies.  And Batman (because he's the best, don't you know?).  And iPads, and negotiating a ten second hug that will make your whole morning.

I think maybe the message needs to be that this experience is hard, but that doesn't mean we wouldn't do it again if we were given the chance. And why shouldn't it be both? Why can't it be hard and exhuasting, with a less clear roadmap and a slower, rougher pace; and also at the same time be worthwhile and miraculous and fulfilling?  Why can't it be terrifying and brave, while also being comfortable and reassuring?  Why can't it be the best thing and the hardest thing you've ever done?  Why should we feel we have to live by only one narrative?  Why can't it be the right thing to do and the right thing for your life?

And if you think about it, that's a lot to celebrate: being part of a great, joyful, difficult, trying, deeply moving and motivating thing.  Oh, happy day.


Thursday, March 6, 2014

To Our Child, Whoever You Are

To our unborn child, whoever you are:

It feels strange to be doing this, writing a letter to the thing jumping around like popcorn popping in my belly, but you have hijacked my thoughts today. Tomorrow we will get to see you again, thanks to the fuzzy black and white magic of ultrasound, and as the hours tick closer and closer to that moment, I cannot think of much but you.

The first time we saw you, you were little more than a tiny seed whose heartbeat was so faint it could barely be picked up by the ultrasound machine.  The next time, you waved your tiny little arm at us.  And the last time we saw you, you were doing upside down aerobics, an honest-to-goodness bouncing off the ceiling type aerobic routine.

Tomorrow we'll see you again, and this time we will look at the chambers of your heart and watch the blood flow into your little organs.  Right now both my heart and yours beat within my body, and though my heart aches to know that yours is strong and healthy, right now you are as much a mystery to me, as much out of the reach of my hands, as I am to you.  Tomorrow we will take a look at that heart, at your finger and toes, at all the pieces of how you are put together. 

I have spent so many days afraid that these glimpses will be all we ever see of you. Every time we've  seen you, I've cried out of relief and joy that you were still alive and moving and growing.  Still with me, still with us.  On many of the long, anxious days since I learned you were growing inside me, I have simply prayed, "Let this child live.  Lord, let me meet this child."

You hear people say, "I don't care what we're having as long as it's healthy."  But that's more than just something you say when you've experienced loss.  It's more than just something you say when you've had a surprise diagnosis at your child's birth, when you've spent long hours on the inside of the NICU and met pediatric specialists and watched the monitors, willing your child's stats to go up.  The hope is not entirely gone after that, but yes, much of the innocence is sucked out of the process once you've been to the other side of "as long as it's healthy."

Tonight I pray hard for the best, wondering if we will get to meet you and who you will be if we do. Soon the doctor will measure your limbs and map the arc of your spine and look into the chambers of your heart.  And I pray, I do, that you pass every one of their tests with flying colors.

But, if you don't, if we find ourselves one more time on the wrong side of "as long as it's healthy," then let me tell you, little one, you are in the right place.  We will walk with you in that path, or we will carry you as the case may be; we will hold you in love or in grief and we will love you for who you are, whatever and whoever that is.  If you don't pass their tests, we will hold each other and cry, and then we will stand together for you, whatever you need, whatever may come. 

I'm not done praying for the best outcome for you, and I suppose I never will be.  But I'm trying to remember, trying to learn and relearn, that I am not the author of your outcome, or of mine, and the one who is has us both wrapped up in a plan that maybe neither of us will ever understand.  I'm trying to remember that even though I don't know the plan, I trust the one who wrote it.  And I believe He gave us to each other for a reason.

So, you dance like popcorn in my belly, and I'll try to get some sleep tonight.  And tomorrow, I'll see you again and know one more small slice of our story, the chapter that began with you and will end wherever it ends, though neither of us can see it from here.

Love,
Mom

*Update: Everything went well, baby looks very healthy, and it's a girl!