Friday, August 11, 2017

Do I wish Caroline were a typical child?

Do I wish Caroline were a typical child?

This is a question I've been asking myself since she was diagnosed in 2011. The answer is yes ... and no. You're probably wondering how I could possibly include a "no" in my answer.

At an appointment today, I was describing Caroline's condition to a medical assistant, and her reaction reminded me that yes, Rett Syndrome is indeed an awful disorder, but no, there's no need to apologize and be sad for us. She's still alive and looking right at you, wondering why you suddenly look so sad. I get it. I wish for Caroline's sake that it didn't happen, but I get it. I know it comes from a good place. I usually try to lighten the situation with humor, but I realize that our sense of humor and way of coping doesn't always translate well outside our household. Me joking to Caroline "let's try not to throw up or have a seizure during the exam" resulted in a smirk and an eye roll from Caroline but an even more uncomfortable and sad look from the lady.

So back to my question. Do I wish Caroline were a typical little girl? I'll start by explaining the "yes" part. Rett Syndrome is horrible, plain and simple. I wish, multiple times a day, that I could take away her seizures, her inability to breathe properly, her discomfort, her pain, her frustration, and everything that Rett has stolen from her. I wish she could do regular things that 7-year-olds do -- hang out with her friends on her own, read books by herself, explore her surroundings, do silly things, share her thoughts and feelings with others, ask us questions, and so many other things I took for granted when I was her age. I would do anything to make her life easier, and I am continuously in awe of her patience, bravery, and strength. We try our best to give her -- and ourselves -- some semblance of a normal life. But the truth is that Caroline has been dealt a very difficult and challenging life, and that pisses me off. At times, I am both angry and devastated that instead of worrying about raising Caroline to be a strong independent woman, I'm having to worry about what will happen if she dies young...or if she outlives us (very unlikely). Both scenarios cause me to stay up at night. I know life isn't fair, but I'm going to say this anyway. It's unfair that just staying alive and fairly stable isn't something that she can do without so much intervention. I hate that Mike and I need to have conversations about all the things we need to do to make sure she suffers less and lives a little longer. Our biggest fear is losing her. Even though we have accepted that will eventually happen, the pain and loss is still unimaginable to us.

Now to the part that is hard for me to explain....why I don't wish she were a typical kid. This is my selfish and brutally honest answer. In short, I love and (or as my mom will describe it) worship the Caroline I know. She is perfect to me, and I love her for who she is. And even though she's first and foremost just Caroline, Rett Syndrome has shaped and continues to shape everything about her. This will probably sound like a terrible thing to say out loud, but I don't find myself wishing Caroline would suddenly turn into a typical version of herself -- a parallel version of herself who talks, walks, and can do things on her own. I don't know and love that little girl so I don't wish for her. It doesn't make sense to me. People often assume that I want what they have. In fact, I've had a number of friends (even close ones) distance themselves from me because they feel bad for me. They feel guilty because they have their healthy kid and I have Caroline. My catty side causes my eyes to roll a few times to the back of my head at this. I can understand their perspective. I used to resent it, but when I put my hypocrisy and defensiveness aside for a minute, I realize that I kinda feel the same towards parents with typical kids. I fear some aspects of having a typical child as much as they fear the challenges often associated with having a medically fragile child with severe disabilities. When Caroline started losing her skills 6 years ago, I was desperately trying to hold bring them back somehow. I looked at other kids and wondered what it would be like to have a conversation with my baby. But months went by and my memory sucks. The only reality I know is the one in which I am lucky to have a child who looks exactly like Mike with a hint of my Korean side, and who is bright and sassy and funny, but whose time on this earth is more limited than others and who happens to need more care and assistance than most. I love the family we have become because of Caroline's condition. I like the person I've become because of Caroline. I just wish that these things had not come at such a high price to her.

Last, do I wish for a cure? I would give anything to alleviate Caroline's Rett symptoms