Friday, October 8, 2010
I find myself frustrated a lot lately. The paperwork and phone calls about Abby-related funding have not made my to-do list shorter. The daily tasks continue. The other day, I had an emotional moment in front of a shelf of Depends in the drug store. I can't find diapers to fit my girl. She's too big for the kids' sizes and too small for adults. I know someone, somewhere makes her size. But why can't they just have teenage-sized diapers at the store down the street? Nothing is simple. Besides, the permanence of this disorder overwhelms me at times like this. I start to wonder how I will be Abby's case manager for the next 60 years. Sometimes, I just want to be her mom.
Thanks to the Ontario Rett Syndrome Association, we recently attended a conference in Kingston. These conferences are held every two years and they bring together families from across the province. This year, there were also families from Nova Scotia, Newfoundland, and Quebec. Besides all the benefits of getting together for support, there is always a line-up of guest speakers on Rett-related issues. I came with my list of questions for families with older girls. I got some input and ideas about proper seating at school and arm bracing to calm the nervous system. I attended a workshop on estate planning and another one on the changes in the support system for adults with disabilities. There is always more to learn and I'm thankful for the people who are there with the expertise, especially the other parents and caregivers. Your donations to the Ontario Rett Syndrome Association support these conferences.
There has been a lot of progress in Rett Syndrome research in the last few years. We were grateful, once again, to have Dr. James Eubanks as one of the conference speakers. He is able to summarize very complicated studies from around the world and make the information accessible to non-scientists, so the parents can follow what's happening. He is currently at a European conference with several other scientists. When you look at the program, you will be amazed at how many people are working to find answers for our girls. Scientists have been able to reverse Rett symptoms in the mouse model, showing that the brain abnormalities in our girls are reversible. Now the challenge is to find a safe way to treat humans with similar effects. Recently, O.R.S.A. announced this year's research grant recipient of $35,000. Your donations to the Ontario Rett Syndrome Association support this research.
It's hard to believe the Run4Rett is only a week away! To find all the links to register or donate, scroll down two posts. Thank you to everyone who has shown support for this event in any way. It is not only our major fundraiser for O.R.S.A. It is a great chance to connect with other families and to visually see the support from so many people in our lives. Abby is not alone in this. She knows it. The shirts arrived this week and they look great! (Pick yours up on race day, inside the building, near the Silent Auction.) I put the huge box of shirts in Abby's room and told her she was in charge of them. She got a huge grin on her face. She is looking forward to the day as much as the rest of us.
We have a lot to be thankful for. Thank you for walking with us in so many ways.
Posted by Karen Congram