I am having one of those moments! You know what I'm talking about, one of those moments when everyone seems like the enemy. I was fine, my day was typical and then I got a call. It was my little M's teacher. She said that M was "a little off" today. M has a seizure disorder, Ataxia and global delays. Talk about a combination. Today it appears that little M is very stumbly. Is it because her medication is affecting her? Is it because she is coming down with a cold, maybe she is just going through a growing spurt. UGH!!! Where the hell are the doctors when you need them? Actually, what the hell, where the hell ARE the doctors. The so call people who are supposed to have the answers? All I have ever heard is "I'm not sure what is wrong" or "nothing is showing up on the tests, so my guess is that she is going to out grow these things". Meanwhile, I have a beautiful, happy and determined little girl that is working harder at the little things than other kids I know. Explain to me how to say OK and accept these answers. My obsessive compulsive side thinks that I should start taking classes and become a doctor. Maybe I will be the one who gives a damn. Maybe I will be the one that looks for the cause and solution and not just move on to the next patient.
The medical industry leads everyone to believe that we have made these great strides with medicine, and maybe we have, but we are still in the dark with just about anything that has to do with the brain.
What about diet? Is it possible that the food she eats, the drinks she drinks, the air she breaths could be causing some sort of allergy? I once saw an article about a little girl that was allergic to water! How the hell did the doctors figure out that one? Maybe the answer is obvious but I am not educated enough to ask the right questions to trigger the doctors to think in a different path.
As soon as I get on one of my rampages the doctors scramble for a little while. Now my rampage has gotten us another MRI. This is only our 3rd and she isn't even 4 yet.
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Great post! We all dread those calls from school. I know that I do. A day without a school call when your special needs child is at school is a very good day.
ReplyDeleteI also have a special needs daughter who was born a micro-preemie nine years ago. She has a seizure disorder, is not verbal, has mild CP and is fed by a g-tube. She is strong willed and keeps me going. I started a blog recently to document our daily adventures. I think it has been therapeutic for me.
Thanks for your posts.
Thank you SO MUCH for your support. One of the things I hate most about being a Special Needs Parent is that I feel like I am all alone half of the time. It is really nice to know that there are other people out there that feel the say way.
ReplyDeleteTHANK YOU For the support!