January 12, 2009
I attended a trivia/brainstorming session for parents last year with my husband Brian. Our son Erik was born with a genetic birth defect called Williams syndrome, and although we tried on a few occasions, we were unable to attend church because of his disabilities.
First of all, I would like to express how grateful we are for the help we received. Janet did a fabulous job of matching us up with Marla, and she has been lovingly caring for Erik during church services every other week. Erik’s brain does not process loud noises well, and they seem to cause him physical pain. For this reason, being in the nursery with crying babies was absolute torture to him. In fact, on one previous attempt to attend church, I left during the service sobbing with our agitated little boy, feeling like we did not fit in anywhere. Now that Marla is on our team, she has introduced Erik to the church experience, and he is thriving there. Lately he has been able to sit with his peers during the children’s moment with Marla. It is not often that things feel “normal” to me, but this simple thing has given me so much joy. I had tears running down my cheeks the first time the door opened and Erik was led to the front of the church. Just like the other children.
The purpose of this letter is twofold. First, I would like to make myself available in the event there are parents who are struggling with a disability in their child. I am concerned there may be others in our community who are feeling alone like we did. We were isolated for years until I finally spilled my heart to a deacon who called to ask how things were going. I am also now part of a local support group in town and consider myself an expert at having coffee with others.
Second, I would like to give you this article that beautifully illustrates the challenges we have been experiencing and will likely experience in the future. It even describes the behavior of a young boy with Williams syndrome. If you do not know Erik yet, he will definitely make his presence known to you in the future. Erik’s syndrome gives him what some have labeled a “cocktail party personality.” He knows no strangers and will approach anyone. If I do not intervene, he will approach people on the street, reach up to them, and hold their hands. While this is terrifying as a parent outside our home, I believe a church environment may be a safe, supportive place for our family to just BE without the constant fear. I do not look forward to the day he realizes he is different or hears someone call him a “retard.” That day will be very difficult for Erik, but it is coming, and his belonging to a group will be even more important. Not everyone believes his odd behavior and friendly mannerisms are charming, and that has been a painful realization over the past few months for me.
My hope is that one day Erik will be able to sit with us in the sanctuary and that the people around us will at least attempt to accept who he is, differences and all. I plan on teaching him to be a polite young man who is respectful and keeps disruptions to a minimum, but I know he will struggle. Only time will tell what is possible for our family. However, it is so much easier to dream knowing we have support from our church family.
Finally, that dark day I left the church crying my eyes out, there was a Christmas tree outside the front doors you had invited us to take a label from. The wind was whipping things around, but I managed to free one without letting it go. The word on it was “COURAGE.” I now unpack it from my box of Christmas decorations each year and place it on my own tree to remind myself how far we have come and what is possible if we dare to dream it.
There is nothing left to say but THANK YOU.
Nancy (Erik’s Mom)