...bitter sweet this would taste."
Thank you Adele
Henry loves Adele. Very few things make Henry happy, as often as Adele. He loves Train, and C-Lo and other top 40 selections, but nothing consistently calms him from a crying fit quite like Adele. Twinkle Twinkle Little Star is a favorite too, just ask his teachers!
Henry also loves the laugh track on Two and a Half Men. He always laughs with it. We get to see a lot of laughing during a Two and a Half Men marathon occasionally!
He loves the applause on Wheel of Fortune and The Price Is Right. He laughs with it! And for about 3 months, Henry loved Phineas and Ferb.
Henry doesn't have many ways to communicate. Laughing, smiling, crying and grunting are about it. So anytime we discover something that makes him laugh, we are pleased and encouraged that we may have a new way to share the world with Henry.
Henry spends a lot of time locked inside of himself. We know he is in there, but have had a difficult time engaging him. There are a few activities that we know he likes, and these are what we go to. It's difficult to introduce new things. He doesn't see or have the ability to deliberately touch. He has learned how to trigger a button to make his teachers sing (recording), or to trigger another rendition of Adele's "Someone Like You"...
This thing... this hospice thing.. this thing where my son is sick... this thing where everyone is sad and sorry... I hate it. Truly and completely. I am having trouble finding the purpose. Henry has struggled for everything that he has, and he doesn't have much.
I suppose this is the part where I admit that I am angry. A deep, gripping anger. An anger that endures laughter and hugs, out lives the bag of licorice, resists the tenderness of my beloved, and anger that lies in wait for an opportunity to attack - and no one is safe.
I suppose this is the part that I admit why I'm angry. I'm angry for never seeing Henry walk. For never seeing Henry hold a spoon. For never seeing Henry proudly present a finger painting. For never seeing him crash his cars together. For never getting a hug from Henry. For never hearing Henry ask for a kiss or a story or some ice-cream. For never hearing Henry tell me about his new friend at school. For never watching him walk away, independently toward the next adventure.
I am angry that he has struggled for so long, to grip and grasp at small pleasures while enduring pain and complete dependence. I am angry that the small successes have taken so long to accomplish that we are unlikely to see many more.
I am angry that my son is sick, that he won't survive.
I'm angry that I have no control.
I'm a woman. When I am angry I respond with a sharp tongue. I respond with tears. Stinging hot tears that can't stop this constant current of helplessness that is flooding my life.
I'm angry. So, I talk about the things Henry loves. Henry loves his sister's voice. Henry loves when Lewis is scolded loudly. Henry loves when his daddy holds him and tells him stories in a deep rumbling voice. Henry loves when Zane sings to him.