When a Doctor Made Me Feel OK About No Diagnosis for My Child
I’m a special needs parent.
My daughter, Karissa, was born in 1999, so I’ve had that title for awhile now. Some days it makes me strong, and some days I cry, but most of the time I’m just tired. Tired of all of the emotions that tumble through me on a daily basis. The utter joy I feel when she “gets it,” whatever “it” happens to be that day. Tired of the looks of pity on other parents’ faces when she doesn’t act like their perfect child. Tired of the giggles from audiences when she’s in a school play and does something others don’t understand. Tired of the guilt I feel sometimes because, while she has issues, she sits in a class with kids whose issues are more severe than hers, and I know some of the other parents resent that.
A friend from high school said something to me I’ve thought about for a long time but could never figure out what to say back. We were catching up, talking about kids and family and how great it all is. I told him about all three of my kids — my eldest was playing hockey at the time, my middle child was involved in anything that revolved around acting or singing. And then there was Karissa, who loves to play but doesn’t have a lot of time for that right now, as nine hours a week of therapy and multiple doctor visits don’t allow for a lot of free time. I’ll never forget what happened then. My friend took my hand, squeezed it and said, “That must be really hard” I just kind of nodded my head, not knowing what to say next.
“That must be really hard.” I couldn’t begin to tell him how hard it can be. The doctor visits… so many doctors! You see, they don’t have a diagnosis for Karissa. For years different doctors have sworn they had the answer, but none of them were ever right. They’d say, “It’s this! It’s so clearly this!” but then a week or a month would go by, and she would do something to totally prove them wrong. She’s been to specialists that have degree sfrom prestigious schools lining their offices like wallpaper. We’ve been to neurologists, pediatric cardiac specialists (who made her wear a heart monitor for a month), we even drove 400 miles to get a second opinion. One doctor did hours of tests over several days, then shook her head sadly and said, “We need to an MRI; I think she’s missing part of her brain, and we need to know right now.” You can imagine what that would do to a parent’s heart. We worried and prayed and prayed some more and asked everyone we knew to pray. After a traumatic time of getting her to the hospital and into the test, the answer we heard was, “Hmm, I was so sure that was it, but her brain’s all there and it’s all working. I just dont understand.”
Why did we go through all of that? Any parent of a special needs child will tell you it’s so important to have an answer. Parents of peer kids hate labels, parents of special needs kids crave them. If someone could tell me tomorrow, “This is what it is,” I could look it up, I could find answers, I could find other people who have been through what I’m going through and they could tell me that it’s going to be OK. Because no one tells you that. No one says that. When you don’t know what’s wrong with your child, you’re left to wonder, “What does life hold for her? Will she be able to live on her own? Will she find someone to love? Will she be OK?” You don’t know how to treat a new symptom, you don’t know if this is a new symptom or if it’s something you should call the doctor about. You don’t know what normal is anymore. Your normal is a whole new normal and no one tells you that. We were told she may never walk normally, she probably wouldn’t talk or socialize and she certainly wouldn’t function on her own. We were even told at one point that she might never be independent. It’s enough to drive you insane. It’s certainly enough to exhaust you.
But there’s hope — there’s hope in those darkest of times. The last neurologist we went to in 2004 observed Karissa for a long time, asked questions here and there but mostly just watched her. She brought him a book to read and sat down on his lap, and she sounded out some words for him, a miracle in itself, as she’s terrified of anyone wearing a lab coat. When she went off to play he looked me in the eye and said, “She has Karissa syndrome. She doesn’t fit neatly into any of our little boxes. I’m not sure we will ever know what happened or what is really wrong, but the facts are she is a bright, joyful, happy child and in the end, what more can you hope for?”
I left that office and for the first time in a long time, I felt hope. And I knew, it is OK. It may not be what I thought it was going to be but it’s OK; she is OK. In fact, she’s better than OK. She’s one of the most loving, caring, joyful people you would ever want to meet.
So, yes, it can be hard, but it’s also beautiful. She’s fiercely loyal, she has the strongest moral compass of anyone I know and fights for what’s fair. She stands up for people who cant stand up for themselves and she has friends, so many friends. They love her for who she is, and isn’t that a great gift? She’s so much more than I could have hoped for, and she’s made all of us better people, and for her, that’s easy.
That’s just who she is. That’s just part of the Karissa syndrome.
This post originally appeared on If Change Is Good, I’m Fantastic!
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