Life has a funny way of working out, even when you don't think it ever can...somehow it will.
Four years ago Brookie and I attended the Aicardi Syndrome family conference. She was a baby and I was a shell shocked, newly crowned, special needs mom. I remember walking in the conference room seeing many many Aicardi Syndrome girls, most in their wheel chairs and many having significant medical issues. I felt like grabbing my baby and hiding in my hotel room. But I toughened up, held it together and once again looked out at the sweet group of girls. There I saw strength, perseverance, happiness, innocence, and I was humbled. The rest of the weekend is a blur but I do remember the feeling of acceptance and love and relief that I wasn't alone was there. And bonus that I had fun!
Flash forward four years later and Brookie and I were able to attend the 2014 Aicardi Syndrome Conference this past weekend in Chicago. This time there was no running for the hills, breaking down or anxiety attacks. I was So happy to be reunited with those who " get me" , those who I have connected with online these past 4 years, these amazing role models who have become my friends. It was seriously awesome!
Brookie and I jet setted to Chicago, with her nurse Tanya joining us on our adventure. We spent the weekend taking classes, reuniting with friends, making new ones, and Brookie had a ball playing in Aicardi child care with other girls like her. Her smile was infectious and she had lots of giggles and performed all weekend. Aside from a bad seizure Friday morning, this girl was ready to play. It was sweet! She knew she was among friends.
I also was in the committee this year so it was fun and rewarding to help behind the scenes and even teach some classes. I still have to pinch myself that I was actually giving advice and answering questions. Oh how Brookie has changed me these last 4 years!
So while things aren't perfect, Aicardi Syndrome is still a tough life at times and I still have SO much to learn, I feel like we are in a good place. And I am good with that. Life does have a way of working out, even when you least expect it.
" Things will work out " - Pres. Gordon B. Hinckley