About a year ago I ordered a pair of arm braces for Reagan to minimize the amount of time that she spent "mouthing". I remember discussing it with my husband because it was such a big deal for us, a sense of defeat overwhelming us as we restricted her arms so that she could be fed and have better focus. I only ordered one pair because the mouthing was going to stop soon, or so I had convinced myself. You see, she wasn't mouthing because she has Rett Syndrome, that would be ridiculous. She did this new thing with her hands because her tongue was itching from allergies, or her reflux was bothering her because we had not yet started her on medication. It is all so funny looking back at how hesitant I was to enter the world of special needs.
In stark contrast, today I ordered 2 sets of arm braces because it was most cost efficient for shipping charges. Yep, I realize the hand movements are not going to stop because it is definitely a RS characteristic and truth be told, Reagan has Rett Syndrome. Last week I made two other big accomplishments to move forward. The first was that I finally mailed off the order form for Reagan's eye gaze communication system. I have only been procrastinating on submitting the order form for 4 months or so. The second was that Reagan's physical therapist and I started the process for getting her a wheelchair (after jumping through many hoops we should have it in the next 3 months or so). I could get her a jogging stroller but what is the purpose, so she doesn't look like a special needs child? She needs the support of a wheelchair and something that will grow with her over the next several years. Check and check, let's move on to the next task.
I am not writing about all the things crossed off of my ever growing "to-do" list to toot my own horn. Rather it is because I had an epiphany today when ordering the arm braces that I am finally accepting the world of special needs. I know, crazy since it has been our world for 16 months but I guess I just resist change. I think that so much of this past 16 months has been a roller coaster ride in which surviving and putting one foot in front of the other was the daily objective. I feel that I am in a different place and that it is much easier than this time last year, just as my wise friends that have older Rett children said. It definitely still hurts on some days and pushing forward can be hard. I still always have to look away and distract my emotions when I see two small sisters walking side by side with their parents and the thoughts invade my mind that it should be the image of our family. I know that I have not reached full acceptance in the grief cycle and not sure if that will ever be accomplished. But I feel that I am spending more time in the area of acceptance before cycling back through some of the other nasty emotions, such as denial and anger.
We took a little getaway to Boston the weekend of Memorial Day to attend the 27th Annual Family Conference hosted by the International Rett Syndrome Foundation (IRSF). I have spent the last week trying to wrap my head around everything that I learned!
The keynote speaker was Dick Hoyt of Team Hoyt with his motivational message of "Yes You Can". Dick and his son, Rick, have run over 1,000 races together, including marathons and triathlons. That in itself is amazing but their story is even more significant because Rick is disabled and in a wheelchair, relying on his father to push him, carry him, pedal him and even pull him in a boat to compete in their races. They have faced many challenges and have never given up, a truly inspirational story!
We received exciting news about the IGF-1 clinical trial that is currently in Phase 1 at the Children's Hospital in Boston. The scientists gave a vague update but the general consensus (since it is still in the early stages) is that they are very optimistic about the results! IGF-1 could have a large impact on the breathing irregularity and digestive issues in Rett children, which would greatly improve their quality of life. Their is even hope that this drug will also reduce the other symptoms that make life so complicated for our girls!
And if that was not enough fun and excitement then the communication sessions that I attended that showed numerous videos of how successful our girls can be communicating surely put me over the top! The first thing that I did when I returned home was send off the order form for Reagan's communication device that I have been procrastinating on submitting for several months. It should be at our front door in less than three weeks!
Last but not least were the fun times that we had sightseeing around the Boston area, once again seeing the Rett Moms that are my friends that make this journey so much more bearable, and meeting more Rett families that understand what a day in the life is like for us. It was a great trip and we are already looking forward to attending next years conference, especially since it will be held in my hometown state of LA (New Orleans!).
Today was a day full of bittersweet emotions as I picked Reagan up from her last day of school. I am so thankful for the wonderful team at Reagan's preschool program for having such a positive impact on her in the short three months that she was in their classroom. I am sad that she will not be with these same wonderful ladies when she starts school again in August. Hopefully Reagan will enjoy her new school and teachers just as much!
Thank you again for treating my daughter as if she were you own!
Hi and welcome to our family blog! We have a 4 year old daughter, Reagan, who has Rett Syndrome and a 2 year old daughter, Lauren. This blog is to help others understand Rett Syndrome and to share our journey.