I looked at Ben tonight in amazement, “I think that it is a blessing that Summit has Williams Syndrome, he is so much better than other kids,” and Ben smiled his agreement. “I have thought the same thing many times.”
If part of grieving is healing through acceptance, than perhaps I’m there. I realized the other day that I have never officially posted a whole article about Williams Syndrome or had a label named thus. Some people, I have become aware of, come to my blog to read about Summit and William’s Syndrome and how I’m dealing with life as it is now. I have posted about my struggle with this in the past, but never really have organized my blog to accommodate new readers to my story. It is all there though, if you click on my “Doctor” or “Summit” labels you can quickly hear my heart. I really don’t know much about Williams Syndrome, there isn’t a lot of information out there. Google Williams Syndrome, skim a couple of articles and you will know pretty much intellectually the same as me. I have, however, gone to so many blogs of mothers with children that have WS and have been thoroughly blessed and more informed by them than any other pages.
Of my heart, my mother’s heart, you will never truly be able to understand unless you have a special needs child of your own. The grief and pain that threatens to overtake me and my fight to trust and believe in an all loving God is what I deal with on a daily basis. But I wouldn’t change it. I have stopped praying that God will miraculously heal Summit of this genetic disorder and have instead begun praying blessings on him. My heart is full, over flowing, with love for my child.
I don’t have a story box like so many other William Syndrome children blogs have on their side bar because my story is so early in it’s infancy and it’s not what my blog is about entirely. Although I think it’s a great idea to have a blog specifically to inform people about WS, I am personally too ignorant to explain it it all so my blog is about ME, living my life with a child with Williams Syndrome and I think you’ll find how surprisingly similar our stories are. So, it’s not about my child, or my husband or the syndrome. It’s about how my life was, and is now. I am still who I am, changed and refined much, but I’m the same person deep inside. I hope this blog ministers to you, it is epic, my story unfolding like a drama before me everyday, never knowing what will happen next.