We Flow with the Changes in Our Child
Last updated: April 2023
Yes, your role as a parent changes remarkably as your child grows from that little toddler into school age and then again into that teenager. Finally into that young adult, they (in our family history) leave to go off to college.
I must say that while your child is still living at home the transition is seamless, meaning you are still able to provide all the support and guidance needed.
Parents oversee everything for a young child
Of course, when they are a young child with spinal muscular atrophy, you are with them daily and oversee all medical and social decisions. You are their advocate with school decisions in regard to any special accommodations in the classroom and with transportation. And of course, you see the final word in all medical decisions.
In our journey through his childhood and as a school-age child, Mike was still quite strong and moving about the world without much trouble. He was enjoying being a boy. Playing with his siblings and neighborhood friends. In fact as I look back at those years now we were oblivious to what the future would hold for him. The future of what this disease would take away from him.
Parents hurt when seeing their child's struggles
There were times when he tried to keep up that we would see the struggles he came across. Playing baseball, participating in the school skating parties, being on the swim team. Somehow he just kept smiling and looked at life in a very positive way. Even though as his parents we always tried to encourage him, our hearts were broken for him.
I do think that each child has the ability to just enjoy themselves and not to worry as their parents do. As the years moved on and his body did grow weaker he found the love of music. Mike enjoyed taking lessons on guitar and the piano. This was a wonderful outlet during his teen years. How great it was to see him in church playing his music.
SMA progression takes away what they enjoy
Again the years and progression of weakness took away his ability to play his music. This realization was difficult for him, but the spirit moved on to new ventures.
New interests keep the young person blossoming
Now he was in that new world of moving on in the freedom found at college. As a parent you're living with anxiety over the worries of him being safe. My worry was that since he was moving around campus on his electric scooter did he look more vulnerable. Many sleepless nights were proven wrong. He blossomed strong and confident with all the new friends who always were available to assist him.
The best advice I would give a parent at the beginning of this journey. As you watch your child grow through the stages while living with the challenges of a disease or disability.
Trusting your child to overcome the obstacles
Trust in your instincts, but most important is to trust your child’s ability to overcome the obstacles. Both the physical and the emotional challenges. Yes there will be some tough times, but trust in the wins too. Both the science of medicine and the love you give them will carry them through.
As a caregiver for someone with SMA, do you make sure to find time for self care?
Have you found yourself facing accessibility challenges lately?
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