Why I'm Not Telling My Daughter the Truth About Her Prognosis

PHOTO: Why one mom is keeping her daughters prognosis to herself. Eden Strong
Why one mom is keeping her daughter's prognosis to herself.

(Editor's note: This article originally appeared on Babble.com. It has been reprinted here with permission. The Walt Disney Company is the parent company of both ABC News and Babble.)

I’ll never forget the first moment I laid eyes on my daughter: The doctor held her up and said, “Momma, you have a baby girl!” And there she was -- brand new, slimy, wide-eyed and silent.

Oh so silent.

As the doctors and nurses worked to clean her up and I lay waiting in the hospital bed next to them, I did what any mother in my situation would do: I asked everyone around me, over and over again, “Is she OK?” because I didn’t hear her crying.

Eventually -- after what felt like forever -- the doctor and nurses declared her perfectly “content,” and handed her to me. My tiny, quiet baby stared back at me with eyes so wide that she seemed to be focusing all the energy most newborns spend on crying on taking in the world instead. And so, I looked at her as she looked at me, and my motherly heart fell fast and hard in love, I agreed with the doctors: She was perfect.

Later, I would count her toes and marvel at her size, and feel the last nine months of pregnancy fears slipping away, because she was here, and she was healthy.

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But the truth is, she wasn’t healthy. I just didn’t know that yet.

Eight years have gone by since that day, and my perfect little baby has grown into a silly, outspoken, creative, stubborn-as-hell, compassionate little girl who learned to tie her shoes at the tender age of 2, signed with a modeling agency by the time she turned 3, and handles herself so well in a debate that I fear I may need a law degree just to argue with her in high school.

She is a typical 8-year-old in all the right ways, but in one way, she is different. She is perfectly imperfect with a beautiful face, an even prettier heart, and a genetic defect so rare that most doctors don’t even know how to explain it. A genetic defect that I don’t know how to explain to her.

I don’t know how to tell her that as she grows, she will also grow weaker; just like I don’t know how to tell her that the braces on her legs will probably always be there. I can’t bear to tell her that the twice weekly therapy appointments she attends are not helping her get better -- they are trying to stop her from getting worse. I’m not sure how to relay the message the doctors gave me that she may someday lose the ability to run, to jump and even to walk. And I’m not sure how to break the news that her dreams of becoming a gymnast will never be anything more than just that: dreams.

I don’t know how to tell my 8-year-old girl, with dreams as high as the sky, that the doctors tell me she may never even be able to fly.

So … I’m not going to.

I’m not going to take away the person that my daughter dreams to be, and crush her before she even gets the chance to spread her wings. No. Instead, I’m going to take everything that the doctors have told me and I’m going to make the best medical decisions that I can for her based off the knowledge that they have. But everything else? Well, I’m just going to leave that up to her. Because although the doctors know her DNA, they don’t really know her.

No one really knows who she was meant to be -- especially not at the tender age of 8 -- and just like every other genetically typical child, she at least deserves the opportunity to figure it out for herself. Just as we are not assigned a life path at birth, I do not believe that she should be limited by a set of symptoms that a genetics manual says might affect her.

They very well may affect her -- I’m not ignorant to the reality of her situation, and I do anticipate many tough discussions on what this may mean for her -- but that doesn’t mean that she needs to live her life forever limited by a diagnostic test. It doesn’t mean that I should tell her not to attempt things and get her to forget about her dreams. In fact, if there is anything that I’ve learned from her over the last few years, it’s that she loves to prove people wrong, never understands the word “no” and lives for the creativity to do it her own way.

So I’m going to let her do it her own way, with all the help that she may need from me. She very well may surprise us all, but we will never know unless she tries.

Instead, I will tell my darling daughter this: I have to confess that there are a few things we haven’t talked about yet, but it’s only because it is not a discussion that needs to be had today. I’m doing this because I trust that you are going to show me who you are, based on who you decide to be, in whatever way you choose. I’m not going to put a roof between you and the sky just because the doctor thinks that he can see one. No, I’m going to wait until you’ve at least had the chance to try and see the sky, because it is you, my dear, who gets to decide how far you will fly.

So today let’s just work on finding your wings. Wherever they may take you, and wherever you want to go, I’m here for you, and I’m going to leave the doctoring to the doctors, because as a mother, my job is to help you fly.

And I’m going to let you show us all how far up into the air you can go.

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