Wednesday, October 8, 2008

Update

Its been a week since I updated. Part of the time I was distracted by fun, and the rest of the time I've been distracted by illness. Friday I had planned to have Jake's blood tests done, however I was given the run-around. After securing Mamaw as a babysitter for Manny I was still unable to get Jake's blood tests done due to some sort of confusion that I don't understand. I'm getting used to wasting time waiting for doctors to communicate with each other though.

Friday night we set off to the Three Sisters bluegrass festival and had such a wonderful time that we had to repeat the performance on Saturday.

Oh well.. i'm trying to write about all the cool stuff we did this weekend, the great therapy appointment, and Jake's apparant great time getting his blood draw (finally) and cracking up all the nurses by saying and signing "Jake is crying.. Jake is SAD." I wasn't there, I was sick in bed with some sort of incapacitating bullshit flu. I am trying to keep my blog positive like I said I would, while in reality we have dealt with two days of tantrums brought on by nothing more than Jake's inablility to communicate or.. as his mother, I am more apt to say, my inability to understand my son. Sometimes I find myself terrified of my son. Walking on eggshells so that I don't set him in the wrong direction. I know that all parents deal with this at different ages, but here it became a lifestyle when Jake was but a few months old.

I feel like I live in some sort of paradox. Where people who don't really know Jake, like my family and peers say "oh, once he gets the therapy/medication/whatever that he needs he will be fine" and the people who really know Jake.. like me, Steve, and his therapists and teachers say "once he gets what he needs he's sure to be 'high functioning'".

Its hard to sort that all out. The people in denial say he'll "be fine" while the people who see kids like him every day call it "high functioning". Does that mean he's going to "be fine"... or that he's going to function at a high level for a "retarded kid." Please don't think that I'm being insensitive (the 3 readers that actually view this blog), because I type this out while crying my eyes out late at night.. because I can't sleep anymore). I'm tired of pussyfooting around the reality.

Meanwhile, I'm just trying to hold myself, my kids, and my family together. No small feat when there are great crisis going on in the great big bad world outside. I wonder if we'll all have a job in a few years, and I can beans while I wonder. I wonder when we'll find a reliable babysitter or nanny who can take over some of the time that I NEED to spend with Jake while I make money for the family, or one who can at least be interested in becoming knowledgeable about Jakes issues and can help us for a few hours on weeknights when we really need it. And if I find that person, can I afford them!

Luckily, the stress of the holidays has not gotten to me yet, well, not too much anyway. This year we will be out of town for the majority of the celebrations, and for that I am truly thankful. The most heartwrenching part will lie in bowing out of celebrations and the great-big gift exchanges that are so important to my family. We just have so much more to think about this year.

Its been a long week.. please excuse the tirade. I'm having a moment.