Tuesday, June 14, 2011


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.


  1. dawn I totally feel you. we too just ordered 2 pairs of arm braces as well! how funny. Avery is braced so much that they get so dirty I need a replacement pair while I wash the others. accepting and doing what you need to do is great-but youre right, it doesnt sting any less when you see that "typical" family cross your path. it still kills me every time. some days i can handle it better than others...but as the time goes on and we accept more and more I think the sting will start to lessen. Im only a few months ahead of you in this but i believe it!
    big hugs.

  2. I feel like I am constantly doing this. When I had to get Eva's wheelchair a year ago. When we got her arm braces a couple of weeks ago. When I had to hire child care so that my other two kids could handle a summer without spending the equivalent of a part time job in a car traveling to Eva's appointments.

    I need to get her communication equipment.

    It's not tooting your own horn. It's part of growing and developing into what we have with us. You're doing great.

  3. I thank God that you have such a wonderful group of supporters that know exactly what you're going through. There is not much I feel like I can do or say to you...other than how awesome of a Mommy you are to those two little girls and offer an ear or hug, but I don't know that "sting" you speak of. It is so comforting to know that you have a whole other "family" of people who do know that "sting" and can lend a helping hand when it becomes too overwhelming! I am grateful for you and for all of your Rett friends! You are ALL doing a great job with your precious angels!

  4. I am so proud of you! Truly I believe that you have weathered the worst of the storm. Those are a few huge feats that you listed off, not just an item on a to do list, way to go Dawn!!! I guess the only question to ask now, do you have arm braces that match the wheel chair? We don't and honestly it is a bit of a problem.

  5. That's great, Dawn! You are such an amazing mom!
    Its so scary to place those orders, definitely not a small task. I do agree that you will now have to order braces to match her chair. We just ordered a second armbrace for our vacation, to keep sand on the beach and out of the Abby's face. What device did you decide on? I can't wait to hear all about it!!