About a month ago I took some much needed time for myself to attend a one-day conference for mothers of special needs children. The conference was held at a beautiful ranch in the local area that offers a tranquil and natural environment for special needs children so it was the perfect location for us. The organizer and host was the amazing Julie McAllister. Julie started the support group Special Moms, Special Healing because she understood firsthand that mothers of children with special needs could use additional support to cope with their new normal.
I can not believe that it has taken me this long to blog about my life-changing experience that day. It has been 16 months since Reagan's diagnosis and I thought that I had a grip on the grief that took over my life once we received the news. I felt that I was coping better with Rett Syndrome and the new dreams that we were going to make for our daughter. However, I realized after this conference that I was not coping any better, rather I was only better at putting on a strong face that everything was fine, sometimes even convincing myself. I had lost touch with who I was as a person, mother, wife and all the other things that I am other than a mother of a special needs child.
There were two wonderful speakers at this conference and I could write a full post on each of them and the positive influence that they had on me that day. But I want to focus on my experience in itself from this conference.
I knew that it was going to be a difficult 8 hours when I could not even speak a full sentence during the introduction without breaking into tears. I did not hold back though, these women understood the pain that I was feeling and I felt the love from each of them. We had a breakout session during Mindy Audlin's presentation where we asked our group for positive input on how to reach a goal. My goal was to finally be at peace with my daughter's diagnosis. There were a lot of great ideas but the one that made me stop in my tracks was "to tell other people about the diagnosis". It was then that I realized that I do hide from Rett Syndrome and tell people only on a need to know basis. This is my life, it is my reality, and hiding from it only means hiding from myself, tucking it so deep down inside that it is as lost as I am. I have talked more about Rett Syndrome in the last 5 weeks than I have in the past. I give out purple cards to other parents in Lauren's Gymboree class and told strangers at retail stores. It is a major step for me and it feels empowering!
During our break I walked the nature paths and found the serenity springs to gather my thoughts. I felt reconnected with myself, with nature and also a higher power. That feeling of reconnected has stayed with me since and I find myself taking deeper breaths when I am outside and trying to soak in my natural surroundings as much as possible. The feeling of peacefulness and calmness surround me and I feel that I can accomplish any feat.
This post has gone on much longer that I wanted and I'm not sure how many people are still reading to this point! But I still want to touch on the discussion from Renee Trudeau on the importance of self care for women. Her opening statement was a quote from Audre Lorde that "self-care is not about self-indulgence, it is about self-preservation." I think it speaks for itself.
Abby's first visit to Boston for the IGF-1 Trial
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