Big Bob, Little Bobby

It's finally going to happen. 28 days after coming into the hospital for a 5-7 day procedure, Bobby is going home tomorrow. The oxygen tank and pulsox (also called a pulse oximeter) are sitting next to his bed, waiting for our departure. We've been trained to use both. After many phone calls, Valerie has arranged delivery of a large oxygen tank to our house tomorrow. The prescriptions are sent to the pharmacy. Bobby's had his discharge echocardiogram. His course of treatment has been cleared by cardiology, pulmonology, and ENT. We're going home.

So many people have helped get us here. The surgeons, countless nurses. Friends and family who have kept Valerie and I sane through this (or at least as sane as we were when we started out). I joke that Bobby is well on his way to being a million dollar baby. Better, I think, to judge the magnitude of what he's been through by how many thank yous we owe.

And among those who we owe a debt is a man who isn't with us anymore. My brother Bob - one of the men Bobby is named after - passed away in November from a brain tumor. I comforted myself when he left that Bobby may have lost his godfather, but he gained a guardian angel. Bob was a very gentle man, very strong in his faith, a man who never complained throughout his illness. He withstood brutal chemo even though the doctors gave him little chance of survival. Like Bobby, he endured blood clots, breathing tubes. In the end, even my brother's strength couldn't win out over the chemotherapy and cancer that ravaged his body. But his spirit remains.

Bobby has shown that same patience and strength throughout his stay in the hospital. No matter how much he is poked and prodded, he starts each day fresh, with a smile and a desire to love and be loved. As day 27 comes to an end he has every right to be fussy - he's had a tube dropped from his nose to his small intestine, he's been held down for an echo and an x-ray, he's had his blood pressure and chest listened to countless times. Instead, he's watching Sesame Street, content as can be.

In the world of Down Syndrome, I think it's easy to obsess about developmental milestones. At our last therapy assessment, the therapists agreed that Bobby's development was that of a 4 or 5 month old. I myself have used that language to describe his progress to doctors. But it's an unfair convention.

True, in his quest to sit up alone, to crawl, his progress is consistent with a typical 4 or 5 month old. But what about the development of the strength required to survive 2 heart surgeries? His patience with repeated medical intrusions? His forgiveness of all the things we've had to do to him to make him well? In those categories he's more than lived up to the legacy of my 50 year old brother, partly, I believe, because his uncle has been holding his hand throughout the ordeal, holding the boat steady while we crossed some rough waters.