Birthdays are hard for many parents of disabled children. Birthdays are a reminder of another year past, more milestones unmet, and for those whose disabilities started at birth, are a reminder of a very sad day in our lives. This has become easier with every passing year because it's just part of the whole deal, but it's still there. This year may be particularly rough. This year Maggie becomes an adult. That means all sorts of changes that Maggie may be ready for, but I am certainly not. For example, Maggie has her appointment with Social Security tomorrow. Because she will be 18 on Saturday it's time to get her into the system.
I spent over two hours completing her Adult Disability Report. Yikes! It's an online report that certainly does not consider a person as involved as Maggie. I had to list ever medication, which is easy enough, every doctor, which is fine but I did not include the doctors at the various hospitals because I have no idea of their names. The form also asks for every medical TEST that she has had. I'm pretty sure the internet would explode (as would my head), if I actually had to list all of them. I don't think I could even tell you all the tests she had done last year, let alone in her life. It simply cannot be done. For every test I thought of I just said this was done multiple times, which is true. Hopefully I didn't forget anything pertinent. They have more than enough information and everything else will be in her voluminous medical records which they will request.
I do feel sorry for whoever gets her file.
Tomorrow morning I take her to the Social Security Office to do the actual application. I think I could have done it online, but a lot of it is unclear when you are dealing with a person who cannot speak or sign for herself. Once they see her, it will be a lot easier, I am sure. It's not as though there is a question that she is disabled and I suspect the intake person will have a way to expedite the forms which are basically designed to confirm disability status.
It will be good to have this done. Anticipation is often worse than reality and I'm banking on that here.
As for the rest of the birthday melancholy - it will be buried in the festivities! Maggie is ready to party down and I am happy to join her.
Many happy returns, Maggie!
ReplyDeleteWe will be celebrating a couple of birthdays here on Saturday, too. It is a great tradition and I hope your partying is perfect for dispelling the melancholy.
I was just thinking about this today -- and wondering whether you had started this process and were finished or whether you'd start the process now, etc. etc. And here you are. I am most grateful to hear it because, as you know, Sophie will be 18 next year. I forget how close in age (and birthdays!) they are and so wish we could celebrate our girls together.
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