Tell Me Why

child looking down with light all around her

6 years ago I went to the hospital for an ultrasound. I had recently suffered a second trimester miscarriage and needed to know that the Rainbow Baby that I was carrying was alive.

She was.

But with fluid separating her skin from her body – a condition called “diffuse fetal hydrops” and with heart holes, the doctor told me that she had a “zero percent” chance of being born alive.

Let’s hold that a moment: zero percent.

He said she had a zero percent chance. He said that I should have an amniocentesis, not for her as she had no chance of surviving, but to know what was going on so that we would be prepared for a similar situation should it happen with a future pregnancy.

Gulp. Zero percent.

So, I did. I went back in the hospital with my husband by my side, and had the amnio, which ultimately revealed the presence of an extra chromosome. Down syndrome.

By the time she was born, her diffuse fetal hydrops had “miraculously” resolved itself, as had her heart holes.

Moxie was born with no health issues whatsoever.

Tell me why now.

Tell me why it’s okay for the doctor to give a sentence like “zero percent”

Tell me why he can get away with this, when if I had believed him and followed through on his recommendation to terminate her life, I would have ended the life of a perfectly healthy child – not that there is anything wrong with a child being born unhealthy. It’s simply that by his own reasoning – health – he was completely, utterly and profoundly wrong.

Tell me why doctors can say “zero” percent and not be held accountable.

Tell me how many other babies are aborted based on a doctor saying “zero percent.”

Tell me why.

Tell me why a doctor – or any person for that matter – can say things to new mothers of a child with Down syndrome.

Tell me why it’s ever okay to spin out baloney, whip up suppositions and slap “Down syndrome” on it. We’ll believe it because we are all know so little and are scared.

Tell me why so many of us are scared of Down syndrome.

child walking through trees with sunlight on her, back to camera

Tell me why.

Tell me why for every little thing that my daughter does, I still feel a strange urge to talk about it, as if her life in and of itself isn’t something to be celebrated. It needs to be explained, justified.

child walking on grass, back to camera

Tell me why.

Tell me why I see this incredible spirit bursting from her, her light, her energy, her glee – and even while I marvel in who she is, I think things like, “if only I had known this when I was pregnant”

child about to slide down a mound on a piece of cardboard two children laughing on the ground

Tell me why people will jump to the conclusion that she is “high functioning” because somehow so much beauty and moxie are not justifiable in someone who isn’t.

child sitting at the base of the mound on her knees, looking down

Tell me why we care so much about “functioning”

child striding through meadow

Tell me what that means anyway

two children hugging each other

Tell me if it’s important in living a life that is meant to be lived

child walking through grass, back to camera

Because I can tell you this:

“function” as a verb means ‘ to work or operate in a proper or particular way’ and as a noun, it means ‘an activity or purpose natural to or intended for a person or thing.’

child walking in meadow with back to camera

Moxie operates in a particular way – which may not be proper. But there is no doubt that her movement in the world is with purpose natural to and intended for her person.

She is exactly who she should be.

child on large mountain

Moxie is 5 today.

Everything that I want to say about her sounds wrongly quantifiable or as if I am justifying who she is, what she is about. I want to say how bright she makes our family, how her energy and light indisputably make our world a more enjoyable place to be. I want to say how smart she is, how creative, ballsy and curious. I want to say that I thank God every.single.day for this child, this child that I would have aborted if I had listened to what the doctors had said.

blurry photo of child looking at the camera

And so even today, as I celebrate the day she came into this world. I want to know why, I want someone to tell me why doctors can say “zero” percent and not be held accountable. I want to know why we, as a culture, are so quick to jump on and eradicate what we suppose will be imperfect when it was so very perfect all along.

child looking down with light all around her

Happy birthday, Moxie.

Meriah
is a deaf blogger, global nomad, tech-junkie, cat-lover, Trekkie, Celto-Teutonic-peasant-handed mom of 3 (one with Down syndrome and one gifted 2E).
She likes her coffee black and hot.
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29 Comments

  • A lot of thought questions…that only God knows…but other ones, we know: Thanks for having the courage and your mother’s instict over the words of that Doctor, Today we celebrate little Moxie birthday! And soon Happy Mother’s day for being so good to your children! 🙂

  • Oh how this story takes me back. Almost 9 years ago, I was pregnant for the first time. After my first ultrasound, I was given similar news. My baby didn’t have a spine past the naval. The brain was malformed. We were told that our baby also had “zero percent chance” at being born alive. I would surely miscarry or deliver a stillborn baby. I could see a specialist if I wanted, but only to officially set up an appointment for termination. Miraculously, when I saw the specialist several weeks later, all of my baby’s issues had resolved. My baby had a spine. My baby had a perfectly formed brain. I also learned that my baby was a boy (the only boy out of 7 kids now). My son was born alive. He is 8 and perfectly healthy. We now have a daughter who sports an extra chromie. 🙂

    Moxie is absolutely beautiful and perfectly made. Happy Birthday, sweet girl. I know how much of a miracle you are to your mama, because I have a miracle just like you.

  • What a beautifully written post. Happy birthday, Moxie! I still enjoy the memory of walking down that street in Indianapolis last summer with you on my shoulders. And, Meriah, you know now with the new testing, it’s not “zero percent” that is leading to unjustified “irrevocable decisions,” but instead women being told by their doctor, “well, it’s 99.9% accurate” (when it never is). There are ways to hold doctors accountable short of a lawsuit: a direct letter to them, a complaint with the hospital’s ethics and/or medical executive committee, or a complaint with the state board of medical licensure are all other ways to hold doctors accountable.

  • She is BEAUTIFUL. Happy birthday, dear girl. I have a grandson, Liam, 9 yrs old, with Down Syndrome. I love him so much and wouldn’t trade him for anything.

  • I needed this today. Thank you for sharing your story, for sharing Moxie, and for your perspective on disability. Sometimes, like today, I need a reminder that disabilities are not the defining factor of a person despite what schools and insurance companies might think.

  • Beautiful little girl!!!! (and wonderful photos too) HAPPY BIRTHDAY, Moxie!! (I always say: Doctors PRACTICE medicine….they don’t KNOW life or what God’s Will will be!) My doctor wanted me to institutionalize my son, and tell the family he died so I didn’t have to “explain things”…. PRIOR to me even getting to hold him!! This doctor needed to be put out of business and license removed, in my opinion. Our handsome Justin, now 33 years old and a delightful young man, is an inspiration to all.

    The doctors that simply “practice medicine” really should “study life” I say!

  • I don’t think you have ever had a blog post that resonated more with me. I get those, “high functioning,” “or just a little bit of ds,” comments all the time. I know these people mean well but it speaks to there ignorance of ds all together… Well written. I am beginning to believe that only those who have a child with down syndrome or the few rare people that can really “see.” Get it. I try not to be to harsh on them, cause, in honestly I would probably be one of them had I not had my daughter to open my heart and eyes… Thank you for this post and Happy Birthday to your amazing little one. 🙂

  • Fantastic article!
    I share my daughter all over. Not to justify her existence but to show people “look! She’s amazing! I’m so lucky! You WISH you had a child like this!!”
    My daughter also has Downs. And I too feel exactly like you do. If any number of people had had their way, this little spark of joy would be missing from the world. And many of them have eaten their words. Over and over.
    Downs isn’t a curse to be eradicated. It’s a gift to be enjoyed and embraced. And we must never stop telling people. xx

  • Doctors do this *after* children are born as well. In the mid-1950s, my mom’s obstetrician decided to deliver me with forceps while I was in a breech position, resulting in a brain-bleed that left me paralyzed on one side initially. Using numbers I am sure he made up on the spot, he told them there was only a 1 in 100 chance I would survive the night. He thought that was the best outcome because he said the odds were a million to one that I would NOT be a “vegetable.” (his word, I never use that to describe any human being) The usual – I wouldn’t walk, wouldn’t talk, etc. Fortunately, my parents were in the minority, who, when told the kindest thing is to let their kid die, resist rather than go along. I have heard many similare stories from survivors of these scenarios over the last 20 years. The dead, of course, don’t get to tell their stories.

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  • I am so frustrated with the medical community telling mothers they always have the option to terminate if the child isn’t “perfect” or there are any sort of health issues. Your story goes to show that what our medical science says is true isn’t always the case. God has blessed you so much with Moxie (I love the name!) and I pray you will enjoy every minute of her!

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