I have been on a mission the last 6 weeks to get Sophie’s medical records updated and reorganized. It’s so hard because there is just so much to document. I started out with a 3″binder several years ago where I tried to keep copies of all doctors visits and studies. Before I knew it I had a 5″ binder that would barely close. Now, I was faced with four years worth of medical and developmental records. I remembered that an old friend once told me that after a while it was easier to divide the binders up by doctors and that is exactly what I did. And here is what I got!
It took me several weeks to print out and file all of last years records. I have a tracking sheet that I used to update with each doctor visit and add notes from the visit like lab work. This helps when you have to look back instead of trying to remember it all or shuffle through paperwork; I was so behind but I’m making progress. Once it’s up to date I will make it a priority to keep it updated monthly for my sake. As I read through doctors visits and wrote out notes on my tracker I found myself reliving so many difficult moments. The infections and the sheer amount of medication Sophie has been on since birth is CRAZY! She is truly my little miracle.
I wanted to have all the records done before we started back up here with her appointments and before I put in an application for the Florida Medical Waiver. The waiver is for individuals with intellectual disabilities that goes based off of the individuals assets and not the parents. It provides more services that disability Medicaid does not. Last week I dropped off the application for the Florida Medical Waiver. Today I received a call asking for the documentation backing up her intellectual disability, they are very strict with the criteria. I was floored that I would hear from them so soon. They are known for waiting lists can be years long.
I decided to go ahead and get the paperwork together so I can take it tomorrow since they are moving fast I should react just as quickly. And, that’s when I realized that no matter how accepting I am or how much I understand that my daughter is intellectually disabled to see it on paper will always break my heart a little more.
The approval for the waiver has nothing to do with Sophie’s health it is all based on her intellectual capacity or lack there of. So as I read through genetic and neurologist reports my heart sank a little more with each word. When I pulled out the initial evaluation for her transition from early steps to the school board I debated whether or not I wanted to read it. I had chosen not too in the past because I did not want anything to taint my positive outlook. Today I read it, I read all the test scores and every single word on the six page report. I decided I needed to be more informed and prepared and I was fine until I read the very last sentence, “Sophie’s overall levels of functioning place her in the mentally handicapped range”.
That was my trigger, and next hing you know I was crying. It’s not like I don’t already know this it’s just so hard to see it on more and more reports. Sometimes I can talk about it and I’m totally fine other moments like today just destroy me.
I know she will always be described worse on paper but it’s hard to see, hear and read. The emotions are just as strong as they were when I heard it all for the first time when she was two weeks old. My ability to cope with it all is stronger but the pain remains and I believe it will never go away, I’ve just learned to live with it and not allow it to consume me.