Monday, April 2, 2012

Another milestone for a very special boy

Our youngest son reaches a milestone this week.

When Colin turns 3 next Monday, he will transition from the care of Early Intervention Services to the Rehoboth public school system. This morning, his physical therapist, Lorna, came for the final time. It was emotional.

Lorna began working with Colin when he was just a few months old, just weeks after he came home from an extended stay in the hospital. You see, Colin spent the first 10 weeks of his life in the Neo-Natal Intensive Care Unit (NICU) at Women & Infants Hospital. It took about six weeks to diagnose that Colin has a somewhat rare genetic disorder known as Myotonic Dystrophy.

When he arrived home, Colin was strapped to a Pulse-Ox monitor so we could always track his pulse and oxygen level. A tank of oxygen sat close by, along with a suction machine so we could unclog his airway if necessary.

In those days, Colin was just a limp, tiny body of arms and legs on the floor. Jenn and Lorna would like on either side of him trying to get him to turn his head, then to lift his head. It took months.

Lorna would lift his dead arms and dead legs, stimulating the muscles, making him work for the first time. She saw him wear his first set of leg braces, to stretch his Achilles tendons and position his feet correctly. Then came a larger set of braces. Then full leg casts, which went mid-thigh to his toes. He looked like the victim of a horrible car crash.

She saw him pull himself up on the couch for the first time. She saw him grasp a walker for the first time. She watched him slide along behind it, then finally learn how to hold himself up and take his first steps. She saw him walk his first true steps unaided. She saw him start to "run" – a kind of hip-swinging, knees flailing, teetering-on-disaster gait that is all Colin.

Today she watched him run around the family room, kick a soccer ball, step over obstacles and duck through a hoop. She led him across a balance platform. She pushed him to go further.

But today she mostly played with him and laughed with him. It's an emotional day. Lorna says goodbye to Colin today.

Early Intervention works with children like Colin until they turn 3, then the public schools take over. A week from today, Colin will be a full-fledged student, receiving heavy doses of speech, physical and occupational therapy at the same elementary school where his two older brothers go.

It's an emotional day for us, too. Lorna has done wonders with Colin, and Colin has done wonders with us. On Saturday, the family took part in the 2012 Muscle Walk for the Musular Dystrophy Assoc. Colin walked a lap and a half around the indoor track at Providence College. Several other young boys rode around the track in motorized wheelchairs. I nearly cried a few times watching them drive and Colin walk.

The line between walking and riding is fragile. We had no expectation for Colin. He could easily have been the one in the wheelchair. I thank God he's not.

I also thank people like Lorna, my wife Jenn and the rest of the team who pushed Colin to where he is today.

I hugged Lorna goodbye a minute ago and then came back up here to finish typing and wipe away the tears. We've come a long way together. Thank you, Lorna.

And thank you, Colin.

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