Today is my birthday, I'm 28. Tonight when I blew out the candle on my pretend birthday cake at the Olive Garden while being embarrassed in public for the SECOND time today, I wished that KayTar will be diagnosed this year...before I turn 29. I know, I know...you aren't supposed to tell people what you are wishing for or it won't come true. I've been secretly (and not so secretly) wishing for this for YEARS and no luck, so I'll take my chances either way.
It seems like it might just be possible this year. I feel like she is finally seeing the RIGHT doctor, one who thinks this is solvable and who feels it is important that we figure it out. At the end of all of this testing and retesting, we might just learn something new.
In some ways, a diagnosis won't change anything. KayTar's ever-present medical issues will still be ever-present. In all reality, we will still just be treating symptoms and putting out fires as necessary. In other ways, a diagnosis will change everything. We can explain KayTar to the people involved in her care by building on the foundation of knowledge that comes from having a named condition. It is so difficult to explain the ins and outs of KayTar without having anything to build upon. She LOOKS normal and SEEMS normal most of the time, so it is hard for people, even people who know her well, to truly understand why she needs to rest more often than others...why she gets sick so easily...why she is going to need a wheelchair for relatively short distances soon...why she can't be out in the sun for long...why she needs a g-button...why she needs therapies...why she needs assistive devices in school...and so on. A diagnosis would give an provide us with a way to explain why for her body behaves differently than other children's bodies. A diagnosis would provide a community and understanding. It would provide a course of action.
A diagnosis probably will not provide a cure. I know that. A diagnosis may provide knowledge that is unpleasant. A diagnosis may be hard to hear. In spite of that, I can't imagine that we will ever wish to go back to this time of trying to find our way down an unknown path in the darkness, unsure what is around us or where we are heading. Not knowing what is ultimately causing her difficulties makes it hard to know if we are treating it appropriately at times. Whatever is going on inside her body has been happening for years and will probably continue to happen, a name doesn't change what it is or where we're headed...but gosh, it sure would be nice to FINALLY know! And hey, if it doesn't happen in the next 365 days...I can always reuse this wish next year. ;)