Spring and summer were difficult for our family this year. Abby's Uncle Mark and Grandma Liz each died. Abby attended the ceremonies and cried tears of sadness. She also joined with us in being comforted by the extra time spent with family and by the support of so many friends.
I am still not ready for September, but it has come and gone. We're back to work and back to school. All the fall busyness is in full swing and I'm still feeling like saying, "What a minute; I'm not quite ready."
In much the same way, after all these years, I feel like I'm not quite prepared yet to have a child with Rett syndrome. There is a lot to learn and adjust to and we are always learning. There are often new symptoms, new life stages, new challenges, and new questions. You are never ready.
Compared to last year, Abby has been relatively happy and free of new symptoms. She's adjusted well to her new class and teacher at school. She even took in the fall fair (albeit with headphones), with all its sights and sounds. She loved seeing the farm animals and shouted with delight at the newborn baby pigs. Just a few years ago, that would've been an impossible outing, due to sensory overload.
October is Rett Syndrome Awareness month. I put together a short new video to show people who still don't know about it. New families are still being hit with this diagnosis, fully unprepared as we were.
The Ontario Rett Syndrome Association is here to help all new families. They are planning a new conference for families and researchers in the spring. They are advocating for people with Rett Syndrome through Neurological Health Charities Canada. They are funding new research projects every year. This year's grant helps one of the first clinical trials for Rett syndrome. Also this year, Abby has directly benefited by being able to use the Rett Syndrome Clinic in London.
All funds from the Run4Rett go to the Ontario Rett Syndrome Association. This year's Run4Rett is just two weeks away. If you still would like to register, you can do it online or in person. You can also download a pledge form for collecting pledges.
When you get to the event on October 15th, you will find the pile of shirts inside the "barn" by the Silent Auction. Just pick your size. First come, first served.
We look forward to seeing those who can come! We'll post photos for those who can't come!
Thank you to all of you who have participated this year or any year by walking, running, pledging, cheering, or donating! Thanks also to all the generous people who donated to O.R.S.A. in memory of Mark or Liz. Over $10,000 was raised through these memorial donations. It is gratefully appreciated by all.