It was a week full of GREAT emotions for Inga – our little girl was attending the SMA Conference for the first time in her life. We were concerned about whether she would find herself among hundreds of other children with this disease she will see for the first time. In addition we, wanting to participate in all the workshops for parents, enrolled Inga to the day-care group organised at the hotel during the conference. There were also concerns about Maks (Inga’s brother): How he find himself playing with other disabled teenagers? Concerns were also present if it comes to Inga’s mom: somewhere deep at the bottom of her heart she still doesn’t want to accept her daughter’s disability…
However, the worries disappeared the moment we walked into the hotel and Inga saw a group of children on wheelchairs and immediately began to smile and ride and spin along with them. Seeing her happiness fear has evaporate from brother and mom as well. In the evening Inga couldn’t wait to see her new friends again. We realized that for the first time in her life she felt “normal”. She saw that she wasn’t the only one on wheelchair, that other children have weak legs too and despite that fact they are bright and happy. When we picked up Inga in the evening from day-care room after a whole day of class, she said she feels “extremely happy” and that she still wanted to play. Of course, she got our permission and with a whole group of children “raged” in the hotel halls until 10pm. The next day she participated in the Boccia competition. She liked it very much – she was very good at throwing balls at the target. She and her brother were “team” not to beat. For the first time, I think we have understood fully the idea and beauty of the Paralympic sports and what it means to all disabled athletes.
We as SMA child parents also met many wonderful people. We learned a lot from them. We have made new connections, which we hope will result in the future meetings of our children and their fun together. On the other hand, there was an opportunity to ask questions to professionals about the treatment of neuromuscular diseases and rehabilitation.
It was a great weekend – Inga felt “equal” and very, very happy. I think we understood that living with our daughter’s disability is and will be beautiful. Just a little bit different. But beautiful.