First Face I Wanna See (A Trisomy 18 story)

Trisomy 18

Me with my Isabel

Today is my Isabel’s ninth birthday — June 13.    It’s hard to believe it’s been nine years since that morning.

It’s a birthday I celebrate quietly, in my own heart.  Usually my mom will give me a card.  But otherwise, we go about life as usual around here.   Because Isabel’s  having her birthday party with Jesus, not with us, as she has every year.

But I do celebrate and remember.  Isabel was born with Trisomy 18, a chromosome disorder that is labeled “incompatible with life.”  And for her, it was.  She lived  for five weeks, in the NICU the whole time.  Those were probably  some of the hardest weeks of my life, but I don’t regret them.  She was a beautiful girl to me, tiny at 4 lbs. 6 oz., with a weak little cry and a head full of soft dark hair.

For a long time, it was hard to think about her without crying.  But the Lord was good to us and blessed us with two little boys after Isabel, besides the two girls we already had and loved.   My life has been very full and happy.  I am no longer sad every time I remember my tiny little girl.  I do miss her and think of her often, wondering what it might have been like, having her here with us.   Sometimes, when I’m mentally accounting for my kids, doing the usual “One, two, three, four — OK, got ’em all” kind of check that moms do, I get this nagging feeling that I missed someone.  And then I realize it’s because I do — miss her.

What I love, though, is knowing that it was not for nothing, birthing a child into this world who could not survive.   Soon after her death, when I was crying out to the Lord for an answer to WHY this had to be, He spoke to me, and I’ve never forgotten what He said.  “This world is not your home,”  He reminded me,  “But it is your birthing place.”   We are called, all of us, to great things — to love, to serve, to create.  To delight in the Lord and in each other. Those callings aren’t just for here, for this time, you know.  They’re for eternity.    Isabel has a future, a plan the Lord designed just for her.  She’s an interesting, productive, happy person.  But had she never been conceived here, on this earth, during this time, she’d have missed out on eternity.  And we’d have missed out on her.

Right now, I don’t know her.  I don’t know what her personality would have been, what sweet little quirks, what different ideas she’d have had.  But I will.  For all eternity, I get to know her, to call her my daughter, to hang out with her.  That’s a gift I would never refuse, despite what it cost us in tears.

Later this month, I’m going to write about the fight that Trisomy 18  parents have been waging — the progress they’ve made since we first heard of this disorder.  It’s been really interesting to watch over the years, and in many ways, encouraging.

But today, I just want to rejoice that one day, I’ll be on the other side of time as well.  And after Jesus, Isabel’s is the first face I want to see.

Our Trisomy 18 baby

Isabel Anwen

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