Friday, May 31, 2013

Another May Bites the Dust

I might be feeling a bit of anxiety, I’m blogging! If you’ve hung out here long enough, you know that May just isn’t my favorite time of year. It was the first time I met the seizure monster in a very intimate fashion. There is always an IEP meeting, this year it was time for another triennial…really, can time roar on like this without a chance to catch your breath? It also entails end of year school madness that eventually results in *gasp* no school at all.  I have again spent the entire spring whispering sweet nothings to myself about how I will prioritize summertime help.

Failed. Again.
I can report that Ava had a fine ending to her school year; first grade was a wonderful time of social growth for Ava with her peers. We are so grateful for Mrs. Pate and her lovely 1st grade class that embraced Ava just as she is. I can’t thank Mrs. Pate enough for honing such compassion and acceptance in Ava’s life, warms my heart tremendously! She was “star student” just prior to school getting out and I must share a few comments from her book made by her peers:

“I think Ava is amazing.”
“Ava is smrt” (I love the underline)
“Ava is a fashionista.”
“Ava is fun to dance with”
“Ava is a good listener.”
“Ava is a love bug.”
“Ava loves her horse.”
Ava also received this lovely card with an even lovelier letter that is a bit too intimate for the blog, it helped me reflect and adjust. No matter how hard or long the day, the years are short and life is worth every bit of sweat and tears endured. Thank you to Ava’s lovely TVI for the reminder, best wishes using that newly achieved Phd to better the world of special education.
Little people continue to surprise us by their enthusiasm when they see Ava out and about in the community. Aliza isn’t sure what to do when Ava gets some positive attention at Target or the park. She is accustomed to the gawkers, the whisperers and the assholes. She is working out how to accept the ever-changing dynamics that we all experience with such a unique family weave (and her bat-shit-crazy mother isn’t always predictable).
I do my best.
Aliza can write all the upper/lower case letters in the alphabet is learning site words and has plenty of friends to chum around the circle with. She is into books, jokes (and shenanigans), cartoons and dancing to name a few activities. She had quite a fancy recital at Union Colony Civic Center that we attended earlier this month; she tapped to Crocodile Rock by Elton John and did wonderful. There was a full house, I would have been intimidated by the size of the crowd but it didn’t seem to faze her or her little dancing friends much.

She is wise beyond her years; nothing slips past and all unknowns are questioned. Some days I’m not so sure there is enough of the mom to go around; she keeps me on my toes at a minimum. I am also aware someday she will read this blog so I try to keep information about her acceptable to the 13-year old her.

Summer 2013, whether I am ready or not, here we come (the kids screaming in the background must be mine)! June is CDKL5 Awareness Month so you’ll probably be reading a tad about that in this space. I hope this post finds you with a smile! 

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