The First Time Pushing My Son in a Wheelchair
Worsening progression of SMA
The years begin to fly by and now the progression of the disease shows its ugly head. This happens so slowly that your Mom radar is tricked into feeling confident that he will be alright. As a parent, we want to believe only in the best results for our children.
We were all excited about an upcoming trip to Disney World. Mike was going into his freshman year of high school, his brother into 7th grade, and his sister into 4th grade. All three were so happy to finally go on this trip.
Needing to use a wheelchair for the first time
When we began our tour of the park, it was apparent that all the hours of walking would be a real challenge for Mike. So we opted to rent a wheelchair for him to use.
We thought this would make this visit more enjoyable for him. His reaction was quite the contrary. His refusal to sit in the wheelchair was a challenge for us as his parents.
As the day wore on and his energy level dropped, he had no choice but to accept the ride. This was our first experience pushing our son in a wheelchair and it really was a defining moment.
The reality of the disability began to sink in
The reality of his disability was a sad and hard time for all of us. Even in the joy of being in this happy place.
We were not aware that because of that wheelchair, Mike and our family were given priority in the long lines. We were whisked to the front of all the lines. So this helped Mike feel some value in that chair.
His high school years passed quickly and now he was a freshman in college. During the summer vacation before he would return for his junior year at college, he needed a wheelchair again.
He was home with my husband and me during our town’s community day celebration. The three of us decided to go over to the park to watch the fireworks display. Again this involved a lot of walking. So again after much debate, he agreed to allow us to push him in the wheelchair.
The need for emotional and physical support from others
I remember vividly how it hit me hard that this was going to be his reality. I wasn’t able to hold back the tears. So again his dad took over and asked me to not allow Mike to see my tears. That was always how we handled any of those weak moments. Teamwork!
This would be my best advice for anyone who is caring for a loved one living with a challenging disease. Having emotional and physical support will carry you through many tough moments.
This is not a life you live alone. Sharing these moments will strengthen your resolve and enrich your life too.
Which emotional aspect of SMA do you find most difficult?