Brookie the Brave; Reflections on Motherhood: Things do work out

Monday, July 28, 2014

Things do work out

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

- Brit

What a weekend, can't wait for 2016!

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Aicardi-what?

When Brookie was 5 weeks old she was diagnosed with a life threatening, non curable disease called Aicardi Syndrome. It was a hard time in our lives but we have accepted it, embraced it, and are loving the life lessons we learn with her along the way. What is Aicardi Syndrome? In short, Aicardi syndrome is a rare genetic neurological syndrome characterized by the partial or complete absence of a key structure in the brain called the corpus callosum, the presence of retinal abnormalities, seizures, global developmental delays, cerebral palsy and scoliosis. While all of this sounds super scary, Brookie is a thriving little girl despite her disabilities. Always a baby, she will be very delayed developmentally, but spiritually she is a strong shining light. Brookie has taught us to remember what is truly important and to look for the silver lining in the clouds on dark days. Though are lives were changed forever, it has been for the best. We love our little sunshine!