This is all kind of funny when you consider the path my life has taken. Being a mom to a typical child takes flexibility, patience, and trust. Being a parent to a special needs child and you can pretty much multiply that by ten or more. But it my case, I have a child with special needs and no diagnosis. She is a mystery. A daily surprise. Not only am I not privy to what her future holds or what is currently going on in her body, but neither are the experts! And this boggles my mind!
If you think this has helped my trust issues, you would be way off. Well partially off. See, I used to think that people got sick or had disabilities and went to the doctor and the doctors could run test and figure out what ailed them. I mean, maybe not with just one test but after a few, right? I had no idea there was a whole world out there of undiagnosed people living with disabilities. And I certainly did not expect to be a part of that world. But here we are. 2 years in. 1 MRI, 1 EMG, numerous genetic testing, a muscle biopsy, a muscle ultrasound, multiple doctor observations, therapy therapy and more therapy, and NO ONE can tell us what this is. There have been abnormal tests but not enough information to give a full answer so basically, they don't know.
And some days, like today, I feel like we may be way off the mark and heading in the completely wrong direction. And this is not just a hunch but a very well thought out researched and talked about real possibility that some of the doctors are off the mark, and we need to reopen something that has been glazed over. Today I am glad I have trust issues with doctors, today I am glad I can listen to a friend that verifies what I have been thinking. I am my child's advocate and I will leave NO stone unturned. And I will not settle for a "clinical diagnosis" based on "observations."
So Monday, I will make a phone call to a doctor that will want to do yet another test that we have done before but that we believe is neccesary again. And this may come back normal and then our hunch would be wrong. But this is what I have to do. This is how I cope with the unknown. I keep moving forward, finding the best therapies for Charlotte. Hunting down the best doctors and who can give us the most information so that we can insure she can have the best life possible. That we are not short changing her at all.
I am learning patience. I have learned techniques to calm myself, and because I am completely candid, I will tell you that I take medicine for my anxiety and have no shame about it. I still hate surprises and Google remains a close companion, I have learned when to stop reading though and which websites to avoid. I will always feel a bit of mistrust in doctors and people that want to stamp my daughter with some unproven guess. Doctors are smart people but my girl is not easily figured out. Which on a side note is kind of fun to me because she is already unknowingly challenging authority which I was known to do myself and I think makes for a strong woman.
So here I sit. A 30 year old with over 10 years of childcare experience. None of which prepared me for this. I thought I was prepared for everything. I am still a person that doesn't like to be surprised and hates the unknown. I can't rely on doctors. And there is a high probability there is no science yet to rely on either. And I have a beautiful little girl with big blue eyes and the best smile you have ever seen. That loves people and tries so hard to do what her body should be able to do. So I continue to keep my head up. Move forward. And trust in the only being that is infallable, my God. He knows. Our hunt will continue. But I will rest in the fact that He knows.
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