I've been constructing this post in my mind all day. Last night Tom and I attended a financial planning night at Gigi's. A lawyer that specializes in the planning for families of individuals with special needs presented and Tom and I came away with so much information that we were in need of. What we found out is that you need a law degree and 30 years of experience in special needs planning to be able to protect your child, or you need to hire someone who does. It is mind-boggling how many hoops parents have to jump through to make sure that their special needs children/adults are provided for both by their families and the government without being taken advantage of. At the end of the night we felt very informed, with a plan of action, and I also felt frustrated. We are responsible people. We pay a very fair share of taxes, we are definitely supporters of the economy, and pay all our bills on time and in full. So it makes me angry that it's just so incredibly complicated to make sure Tera is taken care of. What's equally frustrating to me, and this is a social rant that I don't often do, I'm pretty sure people who are on food stamps and welfare, don't have to sit through and hour and a half presentation on how to use their government aid and how it will all work. It makes me angry that it's easier to get support for people who don't bother looking for jobs and rely on the government, than it is for us to protect the money we set aside, not the government, for our daughter so that the government doesn't take it.
This would be one of those reasons that DS sucks. It makes things harder for Tera to be independent and it makes it harder for us to protect her so that she can be. I haven't said this in a while, but today I realized for a few reasons, that I hate that extra chromosome. It's very hard for me to say that I hate any part of what makes Tera, Tera, but that little thing causes so much pain and hardship.
This morning I read something that just broke my heart. I was reading another blog that I follow and what I read gave me the chills. A fellow parent of a child with DS shared that his little girl, who is only a few months younger than Tera, may have cancer. Because if all the therapies, colds, infections, heart conditions, and social acceptance weren't enough, kids with DS also have a higher incidence of leukemia. It's something I think about often because many parents post about it in my forum, but I try not to dwell on it. And then I read the same thing about a parent who I have followed a little more closely and it's that same punch in the stomach to alert me to the fact that my kid is different. Are there other kids who get leukemia that don't have DS? Of course, absolutely, but the minute she was conceived, her chances were higher than many other kids.
I know there will be another day soon when I'm not so upset about this, but today was just too much.
As I write this, my baby sleeps in her room, sent home from school with a fever. Again. The doctor doesn't think it's a reaction to her shots from Tuesday (that will probably be in a few days) so they think it's probably a virus of some sort. Of course it would be on a weekend, full of plans, and a holiday, but I'm hoping a day at home with mom tomorrow helps her recover faster and we can get on with our plans. We'll see if her immune system agrees with that plan.