Remembering the First Days
As you move along in your life’s journey, the memory of life-altering events comes back in detail. We remember that wedding day and the birth of each of our children as wonderful happy days.
Then on the flip side, we have the death of loved family members, a serious illness, and the diagnosis of lifelong impairment. These events were also life-changing.
Fears of the unknown with a new diagnosis
Our particular journey gave me years of anxiety and tears. Unfortunately, this wasn’t giving me the strength to be the best parent possible.
Luckily my husband was always my sounding board and my rock. In the beginning, there is mostly the fear of the unknown.
The beginning of my son's journey
Mike’s journey began with his four-year checkup with our pediatrician. Since his brother at two was giving us the opportunity to compare both boys' abilities, we mentioned our concerns.
The doctor did look closer at Mike’s strength and he didn’t feel there were any concerns. His theory was that children develop at different speeds.
In July of 1982, we took both boys to the doctor for their 3 and 5-year checkup. Again we mentioned our concerns about Mike.
The doctor recommended holding off until our new baby arrived and to then take Mike to Shriners Hospital for an evaluation.
I did have a former co-worker who was at Shriner and he gave us the reference needed to have Mike seen. It was now the first week of August and my husband, Dennis, was laid off from his job. So it was now urgent for us to move fast because at the end of August we were losing our health insurance.
A rough time for our family
The evaluation at Shriners Hospital was the start of Mike’s journey. We were referred to a neurologist at St. Christopher’s Hospital. Dennis did see a doctor also about a suspected hernia and it was confirmed he had a double hernia.
So in the last week of August, I delivered our daughter, and a day later Dennis had his operation. Two days later Mike and I went to St. Christopher’s Hospital for all the testing he would need to find a diagnosis.
Mike was a frightened little five-year-old and not happy with having a blood test, spinal tap, and MRI which required sedation. It was an exhausting and emotional three days until we headed home.
Waiting for a diagnosis
Dennis came home from his hospital stay and we were all reunited as our family of five. We hadn’t been given any results for Mike until the month of October.
It was a time of uncertainty and anxiety for his future. We felt that after living through these trials, we would be able to handle anything.
Leaning on others for support
In addition to Mike’s ability to bounce back and find joy in being the big brother, we leaned on the love and support from our families and friends.
You realize that both with joy and sadness it is much easier when shared with the people who loved us and our children. Remembering those days does strengthen your faith in a loving God and the blessings we received.
Which emotional aspect of SMA do you find most difficult?