One Year Later

I can't believe it has been a whole year. One year. It was one year ago today when we learned you had Spinal Muscular Atrophy.

One year ago when a neurologist whom we'd never met before tested your little legs, your muscles and your nerves. When he was done, he gently but nervously told you how good you were for him. Then he turned to us and revealed the suspicions he had had since I first took you there four days before, but he couldn't yet confirm. He gravely told us that your motor neurons would eventually die because they are missing a protein necessary for their survival. He told us that we would need a pulmonologist. He told us to go see a research doctor in Dallas. He told us to enjoy you for as long as we could. None of these things seemed to string together, to make sense to us, in our state of sheer pain and grief.

One year ago tonight, after you were asleep, we sat on our patio and cried until our faces were stinging, chapped, sore. I smoked cigarettes until my lungs ached from smoke breathed in through heavy sobs.

We got a pulmonologist. We saw the research doctor, who had virtually nothing to offer. We signed up for physical therapy and occupational therapy. In September, we had a g-tube placed in your stomach to feed you when you became too weak to swallow safely. In December, we were lucky enough to watch survive a 2 1/2 week hospital visit for aspiration pneumonia. After that we were able to justify to insurance your need for a bipap ventilator to help your weakened breathing muscles, as well as other respiratory aids and nursing support.

We now have everything we need to help you overcome a cold, allergies, or anything else that is within our control. We now have help for you from home nurses. We know exactly what is supposed to happen as this disease progresses. It all strings together now, and in some fashion, it makes sense. We will never unlearn the things we have learned to do to care for you--the feeding bag and pump, the cough machine, the suctioning of your nasal secretions to keep you from choking.

What we have to do means nothing, because one year later, all that matters is that we still get to see your sweet, smiling face. We get to talk to you, hear the associations you make and the little words you say, help you with an iPad game, position you, swing you, bathe you, and move your limbs. We get to come up with new experiences for you, like the beach or the zoo. We get to watch Pocoyo with you, and relish your beautiful face in its utter delight. We get to make you as happy as possible, every day.

We are blessed beyond our wildest expectations.