Henry's Blog

Tuesday, September 30, 2008

At about 11:11 pm on Monday, September 29, 2008, Henry's soul left his diseased and twisted body behind. Mama and Dad were with him, holding and kissing him.

Always the warrior, Henry was his own Alamo: Davy Crockett in a Nintendo cap. But being the gentle warrior, his final words were all expressions of love. At one point, he spontaneously declared, "My love is real."

We are devastated and inconsolable.

In a sense, Henry was a child of Shakespeare. Mama and Dad met and fell in love while working at the Alabama Shakespeare Festival, and Henry grew up playing on the grounds and partying in the lobby under the gaze of the large Delacorte statue. We give Shakespeare the last words here:

“When he shall die, take him and cut him out in little stars and he will make the face of heaven so fine that all the world will be in love with night and pay no worship to the garish sun.”

Thursday, September 25, 2008

A Steady Wish

"Love is not affectionate feeling,
but a steady wish
for the loved person's ultimate good
as far as it can be obtained" -
C. S. Lewis

Autumn arrived abruptly. It's crisp cool mornings offer a welcome relief to the thick and unrelenting summer bog, but the gray overcast and shortening of the days somberly echo Henry's shrinking world.

Henry remains a warrior - a gentle warrior. His fight is one to retain his dignity and sense of self. He recently asked us: What if I can never walk again? The simple reply was to just deal with what each day gives us. He was surprisingly satisfied with that answer and has lived that way ever since, with an astounding lack of despair or bitterness. We have heard virtually no complaints as he endures the daily caths and bandage changes, as his filmy left eye became limp and useless and as he lost his ability to hold up his head and control his arms (which cost him the ability to draw, build legos and play his beloved video games). His greatest frustration comes from his now limited speech, and our frequent inability to understand him. Nonetheless, his spirit is not and will not be taken down. Just yesterday he was looking though magazines with Mama and choosing the new movies he wanted to see and new video games he still wanted to play: he will not let his future dreams be taken away.

Every day we celebrate the Wishing Hour, or the wishing minute, to be more precise. A classmate and good friend of Henry taught him to make as many wishes as he could at 11:11 until 11:12. So every day, twice a day, at 11:11 am and 11:11 pm we make as many wishes as we can. Everyone knows you're not supposed to tell your wishes if you want them to come true, but Henry did let slip that one of his wishes was for world peace. Mama and Dad have wished pretty much the same wish, every day, twice a day, for three months. We won't tell, but I'll wager you can guess our wish.

There have been a lot of wishes made on Henry's behalf. Wishes have come in all forms and from all over the world: cards and letters, pins and key chains, homemade blankets and prayer quilts. There have been benefits and tributes for Henry by all the local public schools, the local prep school and the art center where Dad works. The RET Foundation held a 5k run in Henry's honor. There have been prayers, prayer groups, songs sung and candles lit by the thousands. And there was the good luck coin that sailed through the magical jade statue in Beijing. Unfortunately, whatever entities on the receiving end of all these wishes apparently have their own plans.

Those plans damn well better be worthy of Henry.