Tuesday, November 16, 2010


I had a realization recently that really helped me understand that I am still in denial about Brooklyn. It really shocked me. I consider myself a pretty realistic person and of course I live with the reality of how Brooklyn's deficits match up to the real world everyday, so I was suprised at myself.
Brooklyn contracted bacterial meningitis at the age of seven. She was in the middle of second grade and was keeping up with her peers in class. To understand what a feat that is you must realize it took tremendous effort from me and many intinerant teachers, and therapists to get her there. We had worked so hard to get Brooklyn caught up to her peers. When she got sick she lost EVERYTHING. She almost lost her life. Everything her brain had learned about the world had to be relearned. She couldn't even see, because her brain couldn't process visual information! She was a newborn baby.
In November 2008 Brooklyn was evaluated and was determined to be at an eighteen-month to twenty-four-month age as far as cognitive function and reasoning were concerned. At her next in-depth evaluation in February 2010, she was at a four to five-year age level. My point is that I am very aware of her ability level, and yet I was still caught off guard.
At the start of Brooklyn's IEP last week, the teacher was saying that this meeting would be in effect until our next meeting in the spring and then we would have another meeting to transition to middle school. My heart stopped. In my mind I was thinking, "MIDDLE SCHOOL??!!! What??? My daughter is still in second grade". I was shocked to realize that somewhere in my coping mechanism I had been thinking that time had just stopped so that Brooklyn could catch up. Of course I didn't consciously think this. That of course makes no sense, however, when your daughter behaves like a preschooler it is easier to accept she is only a few grades behind. The reality is that Brooklyn is in fifth grade, and yes, next year will be in big, bad, middle school. My heart hurts thinking about this. Why can't time just slow down a little for her? Why is it just racing by while she stays stagnant? I hate it.
Of course there is hope, and I have to leave this post with a positive thought. She had made progress of more than 5 years in less than 3 years time. Her seizures have significantly hindered her progress the last year, however we have reason to hope that a new diet we have just started will offer relief and possibly the chance of reducing her many medications. So far we are hopeful. Hope is the only thing that helps me get my bearings and perhaps that is just another word for denial. Whatever you want to call it, it is what helps me push forward.

Sunday, November 14, 2010

Stuart's Sixteenth Birthday Party

I woke up this morning and every muscle in my body aches! Yesterday I spent the day cleaning, decorating and preparing the house for Stuart's sixteenth birthday party. Brian had to work, so I had help from the kids and Stuart's friend, Malia, to help get everything ready. We strung up all of our Christmas icicle lights randomly all over the ceiling and I used some huge plastic, black, wall covering with stars to cover my concrete floor, (all from last year). We interspersed blue lights everywhere too. The kids played ping pong, listened to music, ate pizza and nachos and had marshmellows around the bonfire. I think it was a sucess! Stuart had fun and that is all that matters.
What I am happy about is that I was able to do the whole party for under $100 dollars! That is including everything! We are on a tight budget and so I had to stick to under $100 dollars. I am so exhasted today! ( Just another reminder that I am not anywhere close to sixteen anymore!)