An Adoption Question That Needs No Response

Sabrina Johnson avatar

by Sabrina Johnson |

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People used to ask me sometimes if my husband and I knew when we adopted our daughter, Juliana, that she had Angelman syndrome. My answer, of course, has always been no, but I never understood why that was relevant.

Now that Juliana is 11, we are rarely asked this question, but we were asked it a lot when she was younger.

I don’t think people were trying to be offensive, and many were simply expressing concern. But it always used to bother me. What I really heard was, “Why would you adopt Juliana if you knew she had Angelman syndrome?” 

If I were crass, I would ask in response, “What about you? Would you give up your kid just because she isn’t perfect?” Of course, I would never do that, but even a wittier response would have been better than the simple no I usually gave them.

Our grass is green enough

Who wouldn’t wonder how life would change after learning that your child has a rare neurogenetic disorder? Toss in the mix the fact that my husband and I are black and Juliana is biracial with blue eyes, and things can be perplexing to people. Our life is different on so many levels, and it’s not a typical life. I’m careful that I don’t let this affect me negatively because in the scheme of things I have a great life. I’m raising two beautiful children and I have a wonderful husband.

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But if you catch me on a challenging day, or at the wrong moment, I might not feel as blessed as I am. I know many people who wake up each day feeling challenged, or who don’t feel blessed. They may not be raising a child with Angelman syndrome, or with special needs, but everyone faces difficult times.

A different forever family

Still, happiness, joy, and contentment are all choices. Even when you are raising a kid with Angelman syndrome. It takes work to see a glass as half full. It’s all about perspective.

Adopting Juliana has been one of the best decisions of my life. Knowing and loving her helps me to be a better version of myself. Almost 12 years ago, my husband and I got to foster a precious baby. And then we got to adopt her. But from the day she entered our home, Juliana was ours, so it doesn’t really matter what we knew about her condition or when we knew it. Our child has Angelman syndrome, and we don’t love her any less because of it.

adopting a child with Angelman syndrome | Angelman Syndrome News | Sabrina Johnson has her arm around Juliana, 1, who is wearing rabbit ears for Easter

Sabrina and Juliana, who was 1 when this photo was taken, celebrate Easter shortly after her adoption became official. (Photo by Sabrina L. Johnson)

Nobody has asked me “the question” in a long time. But I am more witty now and I have rehearsed a response. It goes like this: “Did you know Juliana had Angelman syndrome before you adopted her?” someone asks me. I smirk. “Look at me with her,” I respond. “Does that question really need an answer?”

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Note: Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angelman Syndrome News, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Angelman syndrome.

Comments

Meagan avatar

Meagan

Or how about a blank, dumbfounded look and then you could say..."Why would that matter?"
Or look taken aback and say, "No! Does she really? How wonderful!"
"Yes, I always wanted to take care of a child other people don't appreciate for her strengths."
"No, it was a delightful surprise!"

And btw, you don't avoid this question by bearing the child yourself. "Did you know she had Angelman Syndrome before she was born?" I'm sure they're thinking that, like Down's Syndrome, such a thing can be detected through amniocenteses. But I didn't have that test with either of my pregnancies, because there was no point, the results wouldn't have mattered. This is my child.

There you go, say that. "No, but that wouldn't matter. This is my child."

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Sabrina Johnson avatar

Sabrina Johnson

Meagan--I like the way you think. The combination of the blank look with your last line is priceless. Now, I have more responses in my arsenal. Let's hope I don't have to use any of these anytime soon.

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Christi Gould avatar

Christi Gould

We adopted our son KNOWING he had Angelman syndrome at 7 months old. I've had someone ask me why we'd choose something this hard. We didn't choose Angelman syndrome - our son was a gift to us and he happens to have Angelman syndrome. We also have a biological son with severe disabilities and a gaggle of "typical" children ... but they are ALL OURS - no matter HOW they came to us, with or without disabilities. It's hard when people ask those questions because I go back and forth between wanting to educate them and telling them it's none of their business.

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Sabrina Johnson avatar

Sabrina Johnson

Yes, Christi you are so right. It's hard to have the right response. Then again, why are we being asked these questions? It sounds like you have an amazing family--gaggle and all :). I'd love to hear more about your Angel if you feel okay to share.

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