Henry's Blog

Sunday, May 10, 2009

The Power of One, Revisited

While reviewing some older posts, we noticed this one, which originally featured a YouTube video of some anime drawings set to a song from Henry's favorite Pokemon movie.

The rights were pulled from the video and another song was substituted. We replaced the video with a hastily-created one of our own.

Presented to Mama with love on this melancholy Mother's Day:

video

Wednesday, May 06, 2009

Happy Birthday, Henry


Henry would have been thirteen years old today.

He so looked forward to being a teenager. But instead of celebrating another milestone towards his adulthood, Mama and Dad find themselves immersed in fundraising for cancer research and "awareness." Henry's birthday month coincides with the local "Relay for Life" annual fundraising event, and May is also Brain Tumor Awareness month.

It is bittersweet at best. Our tentative steps toward activism don't begin to salve the open wound that seems to grow more painful by the day.

Mama had volunteered to be in charge of decorating the Middle School's tent for "Relay for Life."

The relay occurs on a walking track defined by hundreds of luminaires - white paper bags honoring patients, survivors and victims of cancer. The bags are weighted down with sand and contain a lone votive candle. Beginning at 7pm, volunteers walk the track in shifts that go on all night - since "cancer never sleeps"- until 7am the following morning.

Organizations throughout the region support the event, which features live music, food and drink, tributes and testimonials.

Last year, the Middle School alone raised about $2000. This year, they raised over $10,000. Students decorated about 100 luminaires for Henry. Mama and Dad created two luminares for Henry, as well as one each for our mothers, and one to a friend who succumbed to cancer shortly after Henry.



One of the teachers sang a very heartfelt "Wind Beneath My Wings" which she dedicated to our precious Henry.

The event also featured a dinner for survivors and caregivers to which we were invited, but felt too uncomfortable to attend.

As encouraging as it was to see all of the positive energy pulling together at one time and in one place, as wonderful as it was to see so many cancer survivors walking the track with vigor and determination, we could not suppress the selfish feelings that cried out for our boy and internally demanded to know why he wasn't one of the lucky ones.

Over the last couple of months, St. Jude has sent us a couple of forms, asking us to update Henry's file since he was released. We haven't been able to complete the forms, as we cannot answer the questions about his current condition without weeping. Parents of children with cancer have developed some codes and shorthand when writing about their lost sons and daughters. We have adopted the term "forever twelve" as a gentle way of declaring what and when, but we cannot bring ourselves to say "earned his wings" or use the cute little carat symbols around the name (i.e., ^Henry^) suggesting angel wings. No parent should ever have to wrestle with such a dilemma.


Yesterday morning we got a call from Dr. Merchant, the head of radiation oncology at St. Jude, telling us that he and everyone in the office was thinking about us and Henry.

He must have heard our crying in the wind.