What were you doing on this day five years ago? On August 8, 2006, Ava was admitted to the hospital for the first time with seizures. She’d been having them before this point but that day they escalated drastically. She was sent to Forrest General Hospital to be kept over night for observation, and before the sun came up the next day she was sent to University Medical Center in Jackson because the seizures couldn’t be stopped. That afternoon, Dr. Evans diagnosed her with Aicardi Syndrome. I say all the time, just like everyone else, that I’m having the “longest day of my life”, but that one really was. On August 9th (D-Day for diagnosis day) we were told how hard her life (and OUR Life) would be, and that Aicardi girls carry a mortality rate of 8 years.
Five years later…
…and she starts kindergarten!
I wish so much I could have known then that despite the hardship, there would be this much joy. I wouldn’t have wasted so much time being sad or angry at our circumstances. Don’t get me wrong, I admire the honesty of the doctors we met with during that time. I have come across a few during her life who think of me so fragile that they won’t tell me every thing I need to know…and I always find out anyway. I just wonder how differently our time would have been spent then if we’d known not to worry about cramming all of her life into a short amount of time. I’ve learned my lesson! Now, we take it one day at a time, and always remember that she’s beating the odds a hundred times over every time she wakes up and does something new – just like she did this morning!
This morning Ava woke up babbling at 5:15 A.M. despite the fact she stayed up babbling until nearly 11 P.M., 2 hours after her bed time! She looked so proud and excited to put on her uniform, she “talked” to me the whole way to school, and as soon as I rolled her into her classroom, she turned all of her attention to her teacher, Ms. Stansbury. I kissed her goodbye but she never took her eyes off her teacher (or stopped babbling!) She had her backpack at her side with her lunch box (filled with Pediasure and feeding tube accessories), and she looked just like any other kindergarten student in the school. Five years ago today was the scariest day of my entire life. I thought I would lose my little girl forever, but today I know better than that. She is living and happy and precious and beautiful and PERFECT! Happy 1st day of Kindergarten, Ava. Now I have to figure out what to do with myself all day long with out my missing limb! =)
Something else pretty spectacular has been happening lately in our community! This past weekend one of our local Chili’s Bar and Grill restaurants sponsored a benefit to support the Wheels 4 Ava foundation (so Ava can get a wheelchair van). They were gracious enough to donate 10 percent of their sales from open to close, Thursday-Saturday as long as the customer mentioned Wheels 4 Ava or brought in a flyer in support of it. I don’t have the info on the exact amount made yet but I know it will be good! My husband took me and our kids for lunch on the first day, and I can’t tell you how much it warmed me to see total strangers walking in with their flyers in hand, ready to support Ava. People from multiple counties attended the benefit, and I wish I had a way to thank all of them personally. On the second day, one of the Chili’s managers asked us to bring in a donation jar for Wheels 4 Ava to be placed at the front of the restaurant. In just TWO DAYS, the jar made $525. Wow! The generosity doesn’t end there, either. There are so many local businesses and people making private donations, and every day I get an email or call from someone with a new way of offering to help. I have always known what a blessing Ava is to me, but I don’t think you can live in this area and see all of this happening without feeling God in it. He has used Ava to be a blessing to everyone! Happy Monday, everyone. And thanks for letting her matter as much to you as she does to our family! =)
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