Spring of 1995 was no different in that respect. I'd wake with that same enthusiasm for starting a new day, but also with the nagging feeling that there was something forgotten, something wrong. And then, with full consciousness, came the realization that would crush out my exuberance: Stephen was dying.
It wasn't happening all at once. In fact, after the initial shock of his illness settled in, the rest of the changes came on steadily, but so gradually, that it was easy to go into a complete denial that it was going to happen at all. I had myself convinced that his illness was just a new "normal" for our family, and that his palliative care could go on perpetually. That the biggest challenge was going to be keeping him comfortable and entertained.
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| Playing a drawing game we'd invented to pass the time. I also spent literally weeks of my life being Stephen's "hands" and playing Donkey Kong Country on the Super Nintendo. |
A wheelchair ramp was built from our front step all the way down almost to the busy street in front of our house. We'd get Stephen outside for short periods, and take him for walks around the neighborhood. On one occasion, a good, kind friend of mine brought over Joe, his Great Dane, to "walk" Stephen. Stephen held onto the leash, and grinned his one-sided grin as Joe pulled his wheelchair over the bumps in the sidewalk. He'd never seen such a huge dog, and Joe was so friendly. He'd lay his head in Stephen's lap, and let him scratch him around the ears. But Stephen was getting heavier, and tired easily even just sitting up, so these outings were getting shorter, and harder.
Stephen's friends, the 6th graders at Hendy Avenue elementary school, were also holding out hope for a miracle. Everyone was feeling powerless. The kids cared so much for Stephen, but didn't know what they could do for him. They tried coming over for visits, but it was getting uncomfortable for everyone. Stephen wasn't physically able to play. He had little to talk about, outside of how he was feeling or maybe the latest ball game score, and the kids were old enough, and just getting socially aware enough, to feel guilty talking about all of the fun he was missing at school. In the awkward silences that ensued, they'd just sit, trying not to stare at how much Stephen's appearance had changed.
In school, the teachers read Sadako and the Thousand Paper Cranes. The kids got to work creating a Senbazuru, a group of one thousand origami paper cranes held together by strings. An ancient Japanese legend promises that anyone who folds a thousand origami cranes will be granted a wish. Stephen's friends had a collective wish for him: that he would become well. He'd sit with them on the sun porch in front of of our house, watching traffic go by, and enjoying the spring breeze blowing through the open windows.
Hendy had such an amazing, supportive teaching staff, one that handled this occasion with so much grace. If any of you are out there reading tonight, I'd like to thank you again for all you did for Stephen, and for our family. It hasn't been forgotten.
Click here to read other installments of Stephen's Story:
Stephen's Story, Part 1: A Flashback
Stephen's Story, Part 2: Wait, what?
Stephen's Story, Part 3: Chemo for Christmas
Stephen's Story, Part 4: There goes the hair
Stephen's Story, Part 5: Radiation and Ronald
Stephen's Story, Part 6: A Happy Birthday
Stephen's Story, Part 8: Promises
Stephen's Story, Part 9: The Long Journey
Stephen's Story, Part 10: Requiem
To donate to St. Baldrick's in honor of Stephen, click HERE!
See the blog post on "Binary Voting" for details on how to vote for or against my head shave!
The "kids" I've been writing about are all about 28 years old now. They are STILL Stephen's greatest supporters, and love him as if he'd never been gone.
ReplyDeleteI'm still going to call them "kids." ;)