SMA is a progressive, degenerative, neuromuscular disease.
Progressive.
Degenerative.
As our family rumbles through the life we now have, confronted daily with SMA alongside all the others issues life hurls at us, we are constantly reminded of the progression and degeneration that surrounds us.
Ella's muscles are experiencing degeneration in a progressive way as they are losing function.
The progression we, as her parents, are experiencing is the onslaught of demands, responsibilities, & reminders of the disease that traps our daughter.
Each demand, every responsibility, and the constant reminders seem to get progressively more in-depth. Each one causes our experience to become more cemented in reality...our feet feel wedged in that cement, unable to move.
Where Ella experiences a degeneration in her muscle function, ours is a degeneration of the life we once had. Each day we feel further and further away from our pre-SMA days; further and further from the life we thought we would have.
We have begun, each in our own ways, to accept the life we have at the moment. We have developed defense mechanisms, coping mechanisms, and reality-check mechanisms...each designed to allow us to feel that things will be all right.
The picture above is a photo of the Handicap Parking Placard that we received in the mail. It will be used until we receive the official handicap plates for the modified Odyssey.
The placard itself represents a progression in our lives. Another stark reminder that we are dealing daily with a disease that has but one end. It places us again further from those pre-SMA days.
The part of that placard that strikes me hard is not so much the icon of the person in the wheelchair but rather the word "permanent" toward the top of the placard.
Permanent.
On the one hand, the progression of SMA is permanent; the degeneration of SMA is permanent; our struggle with SMA is permanent. It's heart-breaking to say the least.
On the other hand, the love we have for one another is permanent; the hope we carry around with us is permanent; the will we (and others) have to fight for Ella is permanent.
While the placard may serve as a reminder of the heartache that SMA brings to our lives, it also serves as a beacon of hope; calling us to never forget what we are here to do. Care for one another.
