For our firstborn son, the first five years of his life were pretty much routine. We were oblivious to any health problems. The only noticeable activity was that he ran slower than his peers, and came down the stairs more cautiously.
A heart-wrenching SMA diagnosis
Then at five years and four months, we began to understand that our son had a health problem. Our pediatrician recommended that we have an evaluation at Shriners Hospital in Philadelphia.
When all the heart-wrenching crazy days settled into an SMA diagnosis, we did manage to obtain some normalcy. Mike started his school days and he just flourished there. He looked forward to each day and his new friends. He also enjoyed sharing his new experiences with his younger brother.
Building a normal family life
We fell into "everything is fine and he will remain strong and happy." For the longest time, his physical strength and function remained consistent, well through his childhood and into his young adult life. It was an easy and comfortable state of mind while watching him continue to succeed in his daily life.
As a parent, you're always in tune with your child's needs and dreams. Our wish is for them to be successful but mostly happy. That was always our desire for each one of our children. The difference with a child with special needs is your overwhelming desire to see them live a healthy life.
Focus on joy not sadness
As the years move on faster than you could possibly imagine you watch in hope. Whenever you see a little twinge of weakness prevent your child from keeping up, your heart breaks a little. You don’t show that sadness because your child is just enjoying whatever activity they are in. And that is what you want for them - JOY.
Monitoring and maintaining our son's health
For years during childhood, we took him to the Children’s Hospital of Philadelphia every six months. During these visits, he was monitored by a group of doctors at the MDA clinic. Many of those visits were routine, but some of those appointments involved important decisions regarding medical interventions, operations, or braces.
Meanwhile, the home front remained routine with school, homework, playing with siblings and friends. All the kids enjoyed swim lessons and spending carefree days at our local pool club during the summer months. Mike had a keen interest in music lessons, and he played both the guitar and piano. This gave him many hours of enjoyment. While his siblings were enjoying competitive sports, he had his music and excelled with it.
Recalling everyday life despite special needs challenges
When you look back at the everyday life you had with your children growing up, it feels that it moved too fast. You savor every memory. That is true for each of your children, but with your special needs child, the health setbacks are painful ones.
What suggestion I would give to a parent of a special needs child today: relax and know this is a time of change and hope. We now live with all the possibilities of treatments. Make good memories and enjoy the everyday routine with your child. Count your blessings.
Is self advocacy a part of your daily life?