I know the picture of this layout is a little blurry, but I really wanted to post these pages today. The pictures on this layout were taken at Shriners’ Hospital the day Caleb got his wheel chair back in 2011.
Caleb was diagnosed with Spinal Muscular Atrophy the week of his second birthday. SMA is a genetic disease where the body does not make a protein needed to keep motor neurons alive. Without this protein, motor neurons in the brain stem and spinal cord die. As the motor neurons die, the muscles weaken. SMA affects all the muscles in the body and many SMA patients have pulmonary complications.
Caleb did not really crawl and never walked. We waited two years to get his wheel chair. I don’t why we did. We tried a gait trainer for him (walker) hoping to see him have some mobility, but sadly, that was only useful in therapy.
Hearing Caleb had SMA was devastating news for Dave and me. There were many tears. Dave had always imagined hunting with his sons, teaching them to play the guitar, and working on projects with them in the garage. Hearing Caleb’s prognosis, our dreams for him had to change.
Dave and I dealt with our grief in different ways. Both of us avoided the topic of wheel chair for as long as we could. We knew that it was going to take great emotional fortitude to see Caleb live life from his wheel chair.
But on that day, August 18, 2011, our reaction surprised both of us. We cried, but overwhelmingly they were tears of joy. For the first time we were seeing our son experience freedom. I snapped pictures while Dave walked the halls with Caleb as he learned the controls. Immediately Caleb was an awesome driver! He loved his power chair – and his only regret was that it was red and not blue.
There would be lots of time for tears – some happy, but most sad. SMA is a horrible disease, that continues to take from Caleb’s body, but it did give Dave and me a new outlook. We learned not to sweat the small stuff and not to take little things for granted.