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The Things I’m Sorry and Not Sorry About Regarding My Daughter’s Genetic Disorder

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A dear close friend of mine is having a “surprise” baby at 43 years old. Her husband said to me what most expectant parents say, “Well, just as long as it’s healthy.” And I’m pretty sure I said the same thing when I was pregnant with my first daughter.

But it’s just not true.

You will absolutely love your baby no matter how healthy or unhealthy they are.

In fact, you might just love them a tiny bit more when they’re unhealthy because you know they’re going to need more of your time, more of your protection and more of your love.

Parents who face a special needs diagnosis for their child experience a myriad of emotions. Grief, resentment and confusion usually top the list, along with questions of “Why her?” and “Why us?”

It’s taken me years of therapy and reading books like Harold Kushner’s “When Bad Things Happen to Good People” to finally come to realize that this randomness of my daughter’s genetic code is just that. Random. No need to search for reasons why she has a genetic disorder. No need to assign blame. Or find explanations. I’ve finally — seven years later — come to peace with it. It is what it is.

And most days I’m good with that. Most days I can stay calm enough to focus on the normal everyday things 7-year-olds deal with: homework and chores and reminders to please, please, please be kinder to her siblings.

But then there are other days. Days like today when I’m smacked in the face with the reality of her disorder and all the scariness that comes with it. Tactless world-renowned doctors who very matter-of-factly tell you your status quo is shifting. Your normal is no longer normal.

After that appointment, my mind was reeling with apologies because I couldn’t help feel sorry for her. Sorry for her reality. Sorry for what she has to go through. Sorry that she has “bad days.” I’m just so sorry.

To my daughter,

I’m sorry life didn’t deal you a “fair” hand.

I’m sorry the rare genetic disorder randomly “picked” you. You are the one in 90,000, baby.

I’m sorry your doctors talk about you like you’re not even in the room.

I’m sorry your extra-large print books aren’t in color. Colored pictures are more inspiring to look at.

I’m sorry when people — including me — label you.

I’m sorry your doctor begins procedures without giving either of us any warning that it might hurt.

I’m sorry when people underestimate your abilities.

I’m sorry when adults point out your differences. To your face. Greeter at Costco, I’m talking to you.

I’m sorry you have an 80 percent chance of passing on this random genetic mutation to your children.

I’m sorry you have to get checked for cancerous tumors every six months.

I’m sorry that because you have to wear a hat every day, every day you have hat hair.

I’m sorry you can’t find me in a restaurant unless I call out your name.

I’m sorry you can’t see 3D movies. They’re overrated anyways.

I’m sorry when a blast of sunshine pokes through the curtains and you gasp in pain from its brightness.

I’m sorry you can’t find your friends on the playground.

I’m sorry your siblings find the Easter eggs faster than you.

I’m sorry every time you fall because you didn’t see the step.

I’m sorry you have to strategically choose your seat so your back is always to the bright light.

I’m sorry your future is so uncertain.

But let me tell you what I’m not sorry for. I’m not sorry how strong this has made you. You have the strength and courage most adults don’t have.

I’m not sorry how determined you are to succeed and how you adapt and overcome obstacles.

I’m not sorry how empowered you have become to speak up for yourself when you can’t see something. You know how to ask for the things you need.

And I’m definitely not sorry that you have come into my world. Despite my unrealistic and naïve hopes when I was newly pregnant with you: “Just as long as it’s healthy.”

Nope. My wish should have been, “Just as long as she’s happy and fulfilled. Just as long as I can love her every day of my life. Just as long as she’s my daughter.”

Nicole Black the mighty.2-001

A version of this post originally appeared on The Wise Owl.

Originally published: August 28, 2015
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