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.
4 comments:
Lynsey- I was always grateful for your example to Hannah, but especially lately I am so so thankful for your amazing atitude. It really strengthens us down here. What strong women to be entrusted with such angels! Love you,
Spencer
I went to comment and saw my name. My sweet husband... he is at school. I love that he reads the blogs. I didn't know that he did.
I love you so much. Spencer is right, you are an example to me. I am strengthened by your insight. Brooklyn has made a lot of progress, and it is fun to see. I know that you are grateful, but still no matter the progress, it does not take away the sadness of having to watch her go through it. If only we could keep them in a bubble and sheild them from all that is hard. I can imagine that you still always feel a step behind. You are AMAZING! You are moving in the right direction, even if it is slow. There is someone else looking out for Brooklyn too, someone who knows her better than you. (if that even seems possible)
You HOPE on Lynsey. It really is more of what we all need. And yes, I guess denial get wrapped in. Looking at life through those rose colored glasses as opposed to when the sun is glaring without any softening agents really is the only way to HOPE. Take it from me, the glaring realist. Hope can go out the window so fast. Your hopeful denial has inspired us all. I know I am more of a believer. Love, Mom
Oh Lynsey, I'm sorry. Life just seems so unfair at times. It's hard to understand what we're supposed to be doing, when we work so hard, and then get pushed down so far. I wish I knew what Brooklyn's purpose was, and how you are supposed to help her. I feel helpless, as I'm sure you do at times. I can't believe Brooklyn will be in Middle School!!! That just seems unreal. Thank you for opening your heart to us, and letting us in on the things you are going through. It's so easy to get caught up in our own troubles, I sometimes forget about other people... I love you, we're praying for you and your family!
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