My mom, the girls and I attended the 5p- Society Conference this past weekend in Indianapolis. It was lovely. There were over 80 families in attendance. It was amazing to see all the kids/adults affected by 5p- syndrome. The seminars/talks were great.
I think the best part (for me; we’ll get to the best part for the girls in another post) was the keynote speaker. James is 43 years old. He was diagnosed with 5p- syndrome when he was eleven years old. I know!! We thought Olivia was diagnosed late at 2 years and three months old. James has us beat big time.
James lives on his own, he works, he volunteers with Special Olympics. He runs marathons, he has his driver’s license. He inspires parents like me to keep pushing my child, to keep my dreams for her and her dreams alive as we both learn and grow through all this.
We attended a talk called Cri du Chat 101, which gave us the basics of the syndrome, talked genetics and debunked a few myths. Perhaps the best thing the speaker said was that our kids continue to develop skills even into adulthood. The speaker’s daughter is 23 years old. He said she has better verbal skills now than she did two years ago. She’s still learning, just as we all continue to learn.
I’ll be honest…I think if I’d attended this conference when Olivia was first diagnosed I would have cried…a lot. I would have been worried sick about the worst-case scenarios and maybe lost focus on what is possible when confronted with the fact that for a lot of individuals with this syndrome, life can be hard. Walking isn’t always going to happen, talking isn’t always going to happen, potty training doesn’t always happen.
But you know what does seem to happen at least most of the time? These kids, these adults are happy. They’re loved beyond measure and with therapies and medicines improving even as our kids improve, the prognosis gets better all the time.
Attending this year for the first time when Olivia is eight years old, I was able to look at my walking, talking, potty trained girl and know that life for her is only going to continue to get better. At least if I have anything to say about it.
I am honored to be a part of the 5p- family. I’m honored to be Olivia’s mother, one of many parents out there who will do absolutely anything to help her child reach her fullest potential and to love that child every step of the way.