Archives for the month of: January, 2011

Ok, so she’s five!  I’m feeling like five is a little bit of a miracle!  In the first four months when we didn’t know that epilepsy would color her future (mostly pink) I thought five would come pretty quickly.  I remember dreading sending her to kindergarten….. flash forward a few years to just a few weeks ago I was celebrating the bus that came to pick her up for preschool not sad at all that our girl was going to school – but excited for her to have the opportunity to be at school!  Perspective changes I guess!

She’s overcome so much to become five.  Medications that can take their toll – and lots of them.  Surgery to remove part of her brain.  Days and weeks in a hospital. EEG’s and on and on.  I still think at times that she must be frustrated by her lack of ability to communicate – but perhaps I put that on her because of my own desire to know her better, to know her thoughts, her wants, what she is thinking.

They make you rate your child’s quality of life as part of an annual visit you have to have with all the relevant agencies.  The case manager asks the question rather sheepishly every year.  I don’t know what she expects us to say – we always say that Grace seems to have a good life – plenty of people who love her, toys, a warm place to sleep, snuggling on a daily basis, toys for the tubby.

Sure, its not the life we imagined those first four months – but it’s a good life – and we’ve all made it to a whole hand!

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Grace is in preschool in Johnston now.  Today was the end of her first full week of preschool here.  When I got home from work today the nurse told me a great story.  The teacher had asked that Grace bring some toys from home that she really likes, so that they could learn more about what she likes, and be sure to have toys that would motivate her.  The assistant she has told the other kids that they weren’t going to be able to play with Grace’s toys.  Our nurse said she quickly said that she was sure that Grace would be happy to share her toys.  One of the girls then said  – “That is how you make friends you know” (by sharing)  and they proceeded to play – and at one point another child said, “All right, now it’s Grace’s turn” and Grace was included in the toy sharing.

Moving has been stressful – emotional- tiring.  But this story did my heart good.  I just had to share.

Joy