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6 Things I Wish I Could Have Told My Mom the Day I Was Born With Hydrocephalus and Goldenhar Syndrome

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Monday, April 2, 1973

Dear Mom,

It’s only been a few hours after my birth. I know you are tired in a wakeful sort of way after over 12 hours of labor. The doctors “didn’t know” my skull would be so swollen with fluid because of hydrocephalus. You knew from your mother’s instinct listening to your own body — but they didn’t pay attention.

I know your body hurts from that long labor and it’s hard to get comfortable. The doctors have done everything and nothing trying to figure this “surprise.” They’re telling you everything now as they educate themselves on my disability. Now they talk to you as though you could understand their lingo. They throw out diagnoses and symptoms like “Goldenhar syndrome,” and “hemifacial macrosomia.” These words confuse you with worry because they tell you nothing useful to you as a mom getting to know her child.

Someone—not a doctor—steps into your room as Dad is sitting with you and gives you the first news you can understand. “You don’t have to keep her. You can place her in an institution.” Those words jolted you out of the numbness that was settling over you as you replied, “She’s not a dress we can return to the
store. She is our daughter. We will do what needs to be done.” And so you did.

Some 40 years after the fact, and having heard that and many stories about the first few years of my life, there are a few things I wish I could have said to you then. Some of them you instinctively knew; some we learned together.

1. Doctors can guide us, but they can’t dictate my future.
I know you don’t know what my future will be like at this point. I know you can’t anticipate anything. But neither can I. Then and now I can only know what I know today. Having met few people with Goldenhar and hydrocephalus, I have little to compare my life to. All I know is today I’m fine — and that’s important to hope for in those first few days, even as you are concerned for my future.

2. Don’t forget my “real life.” I know you want to fix everything, out of concern for the physical, social and emotional ramifications of my disability. But I can’t wait to start living after all the medical procedures are completed. I can’t wait for my doctors to get it right. Laugh with me, enjoy the family, and enjoy yourself. Enjoying the time away from my disability is essential to helping me, I promise. I need to be the kid I am, not a walking medical condition.

3. Accept me as I am.
I was your fifth child. You expected that raising me would be a cakewalk. Instead you will find many things to be different, not just my disability and the procedures and apparatus associated with it. I learn and respond to things differently. You will be surprised by my reactions. My disability will shape how I see things, approach them and react. Listen to me and be open to learning new things with me.

4. I know you worry about other people trying to marginalize me. You can help by reminding me how wrong they are. Remind me that I am smart, kind and capable of anything I want to do. Remind me it’s OK to be different but equal. I’m going to need those reminders. With your support, I will be able to stand up to them and for myself.

5. I love you, and I am grateful for how my life turned out thanks to you. Everything you will do, you will do with my well-being in mind. I may not agree with it at times, because I have a different perspective as the one born with a disability. But I don’t regret a thing. Without the successes and failures and detours we experienced together, I would not be who I am today — and today I’m OK.

6. I am sorry for your worry in the beginning. I worry for you because you never asked for this. You know how things could be different for me without this, and that causes you grief even as you do everything you can to be positive and help me. I hope you see what I see — it was worth it in the end.

The Mighty is asking the following: What’s one thing you want to make sure the special needs mom in your life knows? *If you are the special needs mom, challenge a loved one to respond to this! Check out our Submit a Story page for more about our submission guidelines.

Originally published: June 17, 2016
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