Wednesday, June 19, 2013

"Who would have known how...

...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.


  1. I have cared for Henry, not your Henry, and his name was not Henry but Aaron. He had "no communication" (nonsense). He had no limb control and was bed bound or wheelchair bound. He was fed through a tube. He was seven when I met him and only ten when he died. He loved music, bloody awful heavy rocking metal, but he loved it. His smile lit up rooms. He was the favourite of all the staff (yeah we were not supposed to have favourites).

    I know there aren't any words to make it better, bloody hell I know that, but I just want to let you know that in my experience very few parents cope. Aaron's Dad ran out when he was born, his Mum gave up when he was nearly two. I don't judge them at all, but I want you two, your whole family to know how special you are, and to let you know that through you Henry has already achieved remarkable things, and truly touched the hearts of all those who have encountered him, even those of us who only know him through you.


  2. You have me in tears Rebecca and I completely understand your anger. I wish I could be there to hold you and hold Henry. Life is so cruel without prejudice or reason - this is such a sad time in your life and those who know and love you. I love you and your family Rebecca <3

  3. I am so glad you wrote this. difficult as I know it was, it made me cry, as I recognize so clearly your pain in the simple words of love written here. I am glad to see you let yourself be vulnerable. I love you.
    I completely agree with Si.

  4. As usual your words are perfect to describe an impossibly tangled set of emotions. Your son has touched so many people, as has your whole family. Being sad, being angry and then laughing is the reality of what is. It's grieving and living. I love your son and your family just as you are, including the mixture of anger, tears and laughter.