I have a child who has a progressive muscle weakness condition similar to Muscular Dystrophy. The cause is unknown at this time. She is slowly losing her ability to walk, sit up, and eat. She has multiple other issues and diagnoses from mental illness to chronic lung disease.
To say she has a lot of doctor appointments and follow-ups is an understatement. It often gets rather depressing listening to doctor after doctor and diagnosis after diagnosis.
Many times, I really do not want to go to appointments because I worry about bad news. Obviously, this is not an option, so I keep plugging on and hoping for good news. “Stable” is a word I hope to hear.
“One day at a time” is my motto. I do not think I could do it any other way.
My daughter sees her orthopedic surgeon every four to six months for her scoliosis and contractures. For the past year and a half, her scoliosis was progressing at a steady rate, so earlier this month when she had a follow up I anticipated the “surgery talk” from her doctor.
She had her spine X-rayed, and surprisingly, the doctor said there was no need for a surgery plan now. I cherished the moment and will for a little while, at least until the next follow-up appointment.
Her doctor reminded me that she is only 12 and has a lot more growing to do, and growing tends to make scoliosis worsen. I did not care one bit! All I cared about was finally hearing the word “stable.” That was the best news I could have hoped for.
It was good news for that one appointment and I was thankful. It also meant six more months until the next follow up, which also meant six more months of waiting to do a major surgery. This day was a great one and one that will be held onto for hope and strength. We truly have to cherish those small moments.
The Family Support section of this website has lots of valuable information—it’s worth a visit.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.