Hope is The Word
Last updated: January 2022
Reliving our family stories brings back many memories of my son's journey with SMA. The emotions felt were painful, inspirational, scary, hurtful, and mostly sadness.
Over the years people (mostly females I met along my journey) have said what a brave woman I was. But I know in my heart those compliments are not really my true story.
Living with hope for my child
Every day is a struggle to not scream “why my child” or “why can’t it be me instead.” As the years moved on, I have come to understand that all parents with special needs children (whether physical or intellectual disability) are given an inner power. It’s called HOPE.
Yes, we live in HOPE for treatments or cures. We have so much respect and admiration for the researchers and scientists. Actually, we pin our hopes on their intelligence. Knowing it takes more than intelligence, it takes their desire to make the world a better place for others. We acknowledge their devotion to the cause.
Celebrating a new SMA treatment
December of 2016 was when we read the news that there was a treatment for spinal muscular atrophy. Our family has always come together on Christmas Eve to celebrate the holiday.
That year, my sister brought with her a bottle of champagne to have a family toast for the exciting news. This toast was not for Mike. Aunt Vickie made the toast to the research and science heroes. How appropriate!!
Waiting for treatments was discouraging
We always tried to encourage Mike to stay as healthy as possible. We'd say be your best for when the treatments come. This was our motto for years and years.
To be honest, the waiting sometimes discouraged us. We tried not to show that to Mike. It was so important for him to look forward to that "someday."
Expectations after diagnosis
The different types help to know what impact could be expected. For us, this indicated that the patient is able to walk, but will expect to lose that. All of the information you would want to know is available to you through the SMA organizations.
Sharing my emotions with others
In my particular life lesson, I dealt with the stress of this by sharing my fears and hopes with friends over the years. It also helped educate these people with what I was learning from doctors, therapists, programs, but mostly from Mike himself. These good listeners were my emotional therapy and pulled me through some very sad days.
We would often suggest to Mike that he could see a therapist to share his own thoughts. He never wanted to do that. I’m sure many parents would find that with their child too.
It seems like their coping skills are much stronger than ours. We were happy that Mike did participate in the camp experience each summer and was in the environment of all his peers experiencing the same challenges. He continued with these programs even up to young adulthood. He still has a few of those camp friends today.
Have you shared your SMA diagnosis story with us yet?