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.
Abby's first visit to Boston for the IGF-1 Trial
4 years ago