from fear to acceptance

March 3, 2015 § 1 Comment

The challenge write a letter to the disability that your loved ones has…..

Dear Williams Syndrome,

At the time you entered our lives we were shocked  especially since we never knew you existed. The statistics at that time were 1 in 20,000.   We felt like we hit some bizzare lottery.  (You taught me odds mean nothing).

We learned simple ways to explain your existence and announce your arrival.  People sent us mass cards and cards that said “I’m sorry for your loss” as if our daughter had died. (You taught me to bite my tounge, look at people’s intentions instead of their words or actions.) 

I didn’t answer the phone for the first few months.  I avoided the pity.  I began to create a new circle of people I talked to, mostly therapists, doctors and early intervention specialists.  (You made me embrace you and you made me learn a whole new medical language.)

She began to grow alongside her brother.  I tried to treat them the same. It helped.  I never wanted her to believe her disability was an excuse for lesser standards.  (You pushed me to push her.)

School started and I learned quickly the pain of “the comparison game.”  (Comparing what she could do and what typical peers could do.) This went on for years. I worried incessantly all day when she was at school.  Until I finally went back to work which helped tremendously. (You taught me about anxiety and I found the skills to deal with it.)

Years passed until one day I met an amazing woman who taught me to allow her to “rock her disability”.  I began meeting adults with the same disability and saw the beauty in the future. (You taught me to capitalize on what is good and say the heck with the rest.)

Throughout this journey I blogged with a network of mothers, also members of the then 1 in 20,000 club. We had found each other via the Internet. We bonded. (You introduced me to some of my very best friends and you taught me to find my voice through writing.)

At work every step I took I had the family in mind not just the child.  I aimed to serve them all.  An IEP has to represent the needs of the individual but focus on the vision of the parents. I was able to tell parents that I understood their fear, pain and anxiety.  I try always to be there  for them as much as I am there for their child. (You helped me be a better special educator.)

Fighting for her became second nature. I never knew I was capable of having such a presence in a meeting.  I had to find my strongest sense of self. (You taught me to be strong.)

When other family challenges came that were more pressing or when her medical needs outweighed everything else.  I learned to let go, I learned what was important and I learned to accept help from others. (You made me a better person.)

It’s amazing that over the years I truly did move through the stages of grief. I am only realizing this now as I type.  It never ends, I circle back some times and have myself a glass of wine and a pity party now and then. But mostly I have found acceptance and beyond that I have found a joyous life with my girl who is amazing and my family who has grown with me.  We are an amazing group.  I am so proud of the love and laughter in my house.  In the end that’s all I truly care about!

So thank you Williams Syndrome for making me 1 in 20,000 (or whatever the odds are recalculated to be now).  I have truly hit the lottery of love and a blessed life. 

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