June 14, 2014: Heartbreak

This isn’t a normal weekly update; it’s a piece I had to write as I’ve struggled to accept some devastating news in the Down syndrome community. It’s my way of trying to wrap my brain around senseless loss. If you’re looking for our vacation update, it’s the post before this one. But this one is for three precious babies: Fiona, Ryder, and Annie.

The almond-shaped eyes suck me in every time. Which is funny, because when Sam was born, his little eyes were like a punch in the gut to me. When he was sleeping peacefully, he looked like any other baby. But when he opened his eyes, the reality of Down syndrome was looking right at me. And for the first few days, those little almond-shaped eyes knocked the breath out of me whenever they opened. They were just a reminder of an incredible shock that I still had yet to process.

But now the almond eyes suck me in every time. I see those telltale eyes on a kid, and I turn into a pile of goo. The funny thing is, typical children now look slightly odd to me. Their heads look unusually large, their ears look unusually large, and their noses look lumpy. They’re cute; don’t get me wrong. All kids are cute. But those features look odd to me, and the ones that really leave me breathless in a my-god-that’s-an-adorable-kid kind of way are the almond-shaped eyes; the small, low-set ears; and the little flattened noses.

Two years in, I’ve reached a point where Down syndrome is my normal. It’s the standard against which I see other kids. And when I see a child with Down syndrome, that kid immediately has a place in my heart. I think that must be common, because the Down syndrome community is incredibly close-knit. We meet, and we’re instant friends. We’re supporters, cheerleaders, sounding-boards, and people to laugh with. We often have but one thing in common—a child with an extra chromosome—and yet that one little thing creates a fiercely strong bond between us. And even when we don’t know each other, we feel like family.

And so this week has been very hard. Pieces of this family are splintering. Two precious babies have already died, and a third one has been given only a few days to live. These babies are roughly the same age as my Sam—around two years old. And their little lives have been tragically cut short, leaving behind grieving parents and siblings, and an entire grieving Down syndrome community.

Little Fiona Grace, who wasn’t able to recover from her heart surgery, was not my child. Little Ryder, who went to bed fine, woke up the next morning with a fever and rash, and was dead by 2 p.m. that same day, was not my child. And Annie, who was denied a heart transplant because she has Down syndrome, whose skin is an unearthly shade of blue, and whose heart is struggling to beat just a few more times, is not my child. But they feel like a part of me, because they are a part of our community. I see their pictures and those familiar-shaped eyes, and it knocks the breath right out of me to think of how badly their families are hurting.

It would hurt me to see any child die, but it hurts me profoundly when it’s a member of the Down syndrome community. Tears have leaked out of my eyes countless times in the past couple of days, and they leak as I write this. In part, the tears come because that could be my son, and it is only by the grace of God that my son was born physically healthy. But in even bigger part, the tears come because I know what it’s like to fall completely, utterly, one-hundred percent head-over-heels for a little person that you never would’ve dreamed you would have. You imagined typical children when you pictured your future family, and then you were greeted by one with almond-shaped eyes. And that knocked your perfectly ordered little world right out of its orbit and sent you flying off into outer space, without gravity to hold you down. But then you found you liked being weightless and giving up some control, and before you knew it, outer space suddenly became far more normal than you ever would’ve thought…and almond-shaped eyes became your standard for beauty.

I know that feeling. I know it so well that I can imagine the incredible pain the families of Fiona, Ryder, and Annie are going through, having been given the most incredible, unexpected gift…and then having it cruelly snatched away. I hope and pray that I will never have to experience that pain myself, but oh, how I can imagine it. And my heart aches for them. And it aches for those beautiful babies who didn’t get the chance to grow up.

Good night, sweet Ryder and sweet Fiona. And sweet Annie, I wish you a gentle, peaceful journey for your last few days. Little babies, you are not forgotten. A whole community of people who don’t even know you are aching for you and your families. And we won’t forget you.  

Ryder
Ryder

 

Fiona
Fiona
Annie
Annie

 

Leave a Reply

Your email address will not be published. Required fields are marked *