Tuesday, September 6, 2011
My Blue Butterfly
I know it's been awhile, but by the time I get the kids to bed, I am so exhausted I crash into my own bed. Not that I fall fast asleep, but at least I try...
I have been having the worst nightmares lately, mostly due to the wonderful pregnancy hormones and my overactive imagination, but the troubling part is about every other night I am having dreams about Bella dying in some weird and very possible way.
I usually wake up gasping, nauseous and unable to go back to sleep. So that is keeping Bella and her issues on my forefront (like they are ever anywhere else?!).
As her sixth birthday is rounding back around again, talk has been going to what she would like for presents, decorations and party guests. She changes her mind constantly between Wow, Wow, Wubbzy and Peppa Pig. Both are NickJr shows that she can't go a day without and both are difficult to find and expensive to purchase (that's my girl!).
Searching for Peppa Pig stuff the other night, suddenly got me so depressed and anxious that I had to stop my search. The things I found were too small in size,both for play (visual and fine motor) and for wear. Then I thought she might like a new backpack for school, but since everything was based around baby-like toys, I begin to wonder if she would only get made fun of by other kids if she had a backpack from a toddler show when she starts 1st grade next year in a public school.
And it's more than just a silly backpack that has me worried. Bella remains such a mystery with her social interactions and play skills. Will a new group of kids give her the chance she needs to adjust before writing her off as "too different" or will a new teacher understand how to overcome her obstacles with a classroom of other children demanding attention?
After school today was our bi-weekly appointment for her infusion at the Hospital. This is something we have been doing for five and a half years straight and I swear each time is continuing to get worse for fits and screaming. Today might've been the tops to any day.
We have the same set of nurses each time and Bella is spoiled beyond belief with snacks, movies, activities and freedom. Using their computers as her "office", having her own mini DVD player to watch Wonder Pets, chocolate milk, Teddy Grahams, chips, Popsicles, coloring, play rooms, etc.
Thank God for her speech, but today it was breaking my heart! When the time came to administer her medicine through her port she starts screaming and throwing her body around so that neither her Nurse or I could control her. Yelling at the top of her lungs, screaming for us to "go away", "stop hurting her", how terrible we were, "leave her alone". Covering her face with her hands, huge crocodile tears flowing down her checks, until her face was bright pink and stained.
Bella kept staring at the nurse with almost a fear in her eyes that we couldn't figure out, then the other nurse noticed that the nurse giving the medicine had on a mask over her face and she promptly removed it once noted, suddenly Bella calmed down to a point where we were able to control the situation a little better and ease her worry.
A mask? That's all it was. A mask sent her to a point that was concerning to all involved. And why wasn't she able to voice that?
This time was a mask. Last time was holding her down. The time before that was because she was tired. The list goes on, my point is that she acts in ways that are socially unacceptable to an almost six year old.
Where does this leave her in society? Each year that she grows and changes it continues to bring about great things and progress, but we also see gaps. Gaps that also seem to grow and cause alarm.
How as a Mother, the person closest to her and most responsible for her outcome, help her??? Will my dear, sweet,loving, social butterfly be stuck in her cocoon because she herself doesn't even understand how to help herself?
Yes, I worry. I worry constantly. At this point, I feel my worries are justified and hard to face.