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 that I feel when she "gets it" whatever "it" happens to be that day. Tired of the look of pity on other parents' faces when she doesn't act like their perfect child. Tired of the giggles from audiences when she is in a school play and does something that others don't understand so they laugh, again with pity, but more because they don't know what other reaction to have. Tired of the guilt that 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 that some of the other parents resent that.
A friend said something to me that I have thought about for a long time but could really never figure out how to answer it. It was a friend from High School and I hadn't seen him in a long time. We were catching up, talking about kids and family and how great it all is. I told him about all 3 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 Karissa. Well Karissa... she loves to play but she doesn't have a lot of time for that right now as 9 hours a week of therapy and multiple Dr. 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.
I've thought about that moment a lot over the years. "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 know whats "wrong" with Karissa. For years different Doctors have sworn they had the answer but none of them were ever right. They would say "Its this! Its so clearly this!" but then a week or a month would go by and she would do something to totally prove them wrong. She has been to specialists that have degrees lining the walls of their offices like wallpaper from prestigious schools all over the world. All of them sure about one thing or the other, then they order a test and it wouldn't be the right diagnosis after all. We have 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 gave her hours of tests over several days and shook her head sadly and said "we need to an MRI, I think she is missing part of her brain and we need to know right now" You can imagine what that would do to a parents heart. We worried and prayed and prayed some more and asked everyone we knew to pray. Well after a very traumatic time of getting her to the hospital and into the test the answer we heard was "hmmmm I was so sure that was it but its all there AND its all working. I just dont understand"
Why did we go through all of that? Any parent of a special needs child will tell you its so important to have an answer. Parents of peer kids hate labels, parents of special needs kids crave them. If they 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 am going through and they could tell me that its going to be ok! Because no one tells you that! NO ONE says that. When you don't know whats wrong with your child, you are 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 its something you should call the Dr. 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 that she may never walk normally, she probably wouldn't talk or socialize and she certainly wouldn't be able to function on her own. We were even told at one point that she might never be able to be independent. Its enough to drive you insane, certainly enough to exhaust you.
But there is hope, there is hope in those darkest of times. The last neurologist that we went to, in 2004, observed her for a long time, he asked questions here and there but mostly he 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 is 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 its ok, she is ok. In fact, she is better than ok. She is one of the most loving, caring, joyful people you would ever want to meet.
So, yes, it can be hard but its also beautiful. She is fiercely loyal, she has the strongest moral compass of anyone I know and fights for what is 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 is so much more than I could have hoped for and she has made all of us better people and for her, that is easy. That is just who she is and part of the "Karissa syndrome".
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