Things We Learned as Parents
Mike’s brother, Dan, was a competitive runner since fourth grade and he was Dan’s biggest fan and supporter. By high school, Mike joined the track team as their manager. The manager kept times and scores during track meets.
At this point, Mike was driving and always took Dan to practice and went to all of his meets. This was a big help to us as we worked full time and we couldn’t always be available to taxi our kids to all of their extracurricular activities.
Challenges walking up and down a hill
The track sat up on a hill away from the parking lot. This was a challenge for Mike to walk up there safely. So Dan would carry Mike on his back and of course, carried him back down the hill to his car.
When talking with the coach one day, he gave me an emotional tribute to both our boys. He said every day when the practice was over he would watch them with a lump in his throat. As their parents, we couldn’t be more proud of them both.
Learning to step back as parents
What I’ve learned from this is that we didn’t have to do everything for him, we could trust the goodness and love from others. Mike is blessed with siblings who love him and would do anything for him.
His sister always shared music with him. In fact, he taught her the piano while he was taking lessons.
Managing expectations and responsibilities
While growing up, Mike performed the same chores as his siblings. Cleaning his room, dishes, vacuuming, and dusting.
In the summer he mowed the lawn on the riding lawnmower. That was a chore he loved, driving around the property.
Even though our instincts were to protect him, we wanted to give equal expectations to all three children. In the big picture, these responsibilities helped build his character and confidence.
We thought we were teaching him, but hindsight tells us he was always teaching us to believe in him.
Challenges when one child has more needs than the others
The toughest part of being a parent with a child who has special needs is to be conscious of giving equal attention to your other children. His needs were pretty minimal for many years so we felt that we were doing a fair job.
Again hindsight shows that it was not always equal. We can’t go back and correct our mistakes, so as adult children we can talk with them and apologize for any missed opportunities.
Savoring a sense of independence
These were Mike’s freedom days. He was able to drive and he got his first job at a pizza place taking phone orders.
He cherished his independence and was very good at handling his finances. He was always very generous with gifts for his family and still is to this day.
Letting go of the "what if's"
Most days my husband and I were praying for a treatment or a miracle. I spent many days asking Dennis “Do you think he will be able to walk to get his diploma when he graduates?”
I remember those days vividly. Dennis would remind me of those questions on his graduation days. “Here is your answer, he is walking up there.” What I have learned over the years is you just shouldn’t waste so much energy over the “what if’s."
Have you, or someone you know been diagnosed with SMA?