There is so much to life. So many pieces that fill our days and nights. Sometimes that's one of the harder parts about losing my Hank...that life really does go on. It seems a bit cruel that we can't just stop the world for however long we need it to be stopped so that we can stay in a cocoon of sorrow. I guess I could do that, isolate and crawl under heavy covers of pain, but I haven't and I won't. If I did, Hank would be very displeased.
So on I go, living life to the fullest degree that I am able, acting as if most of the time but keeping at it. And because I choose not to stay under the covers, however tempting, I am amongst people quite a bit. People who love and support me. People who let me be very messy, and people who can bring a bit of welcome laughter to my hurting heart. And people who say all kinds of things in an attempt to make me feel better as I grieve the loss of my beautiful son. So I want to say this very carefully, and with copious amounts of love, that sometimes folks say things that can actually hurt. And I do say this carefully because I know, really know, that people just want to help and lift up, and it can be very hard and awkward to know what to say. I really do get and appreciate that but well, here I go.
As most of you know, Hank was very physically challenged and was a non-verbal communicator. I will not pretend that there wasn't a time when I prayed that my boy would walk and talk, and one of his greatest challenges that he really had to work through was that he wasn't able to speak. Even with intense therapy from the time he was 4 months old...traditional occupational, physical, and speech therapy, and a myriad of outside therapies such as Feldenkrais, cranial sacral therapy, massage, osteopathy, Alexander Technique, acupuncture, chiropractic...the list goes on, Hank was never able to walk and talk. But he was able to move and communicate in many beautiful ways, and everything that we did, I believe, helped him to reach his highest potential.
Because we were always out and about kinds of people, there were many times in Hank's life that folks came up to us and asked me, right in front of him, "What's wrong with him?" My heart would skip a beat. It crushed me to have someone ask me that, and hurt and anger would well up pretty intensely inside of me. But I would say (as nicely as I could), "Well, I can tell you what's right with him." I never minded, even welcomed, someone asking me about him when it was in such a way as to include him in the conversation and to learn about him, but asking what was wrong with him would, as my mother would say, set my teeth on edge.
These days one of the things people often say to me is, "You know that now he is whole. He is running and jumping and free...and so on." And again, I know this is said with love and to comfort me, but if I'm honest it brings me back to the times when folks would ask me what was wrong with my son. And if I'm really honest, what does it mean to be free?
I don't pretend on any level to know what Hank looks like these days, but I do know that he is soaring, and that he is free. (I believe that at the time of our passing, we all get a break from living in the constraints of our limited physical bodies.) I also believe that while on this earth plane Hank knew a freedom that few of us ever experience. Once he came to terms with the fact that he might never walk or talk, but that we would always do everything we could to help him to achieve his highest potential, Hank had a contentment and a peace that, quite frankly, I often envied. Hank was one of the most spiritually connected and peaceful people I have ever known.
My sister-in-law Kathy tells me that when she pictures Hank now she pictures him riding a mechanical bull, and I love that. She never says it in such a way that implies that he was less fortunate than anyone else while here on earth, or that he suffered through his life, just that that's how she pictures him. And it gives me strength when she shares that with me because Hank was a very fun loving and adventurous person...it fits.
When I picture him I see him in a gold wheelchair wizzing around with Jesus. Weird maybe, but that's what I see.
I loved Hank exactly the way he was. There was nothing wrong with him. He was the most perfect being that God could have ever given to me and I will never have words to express my gratitude for the gift of him, just the way he was.
The picture I have posted with this blog is of Hank and me in 1994 dancing at my brother Chris and sister-in-law Kathy's wedding. I was a bridesmaid and Hank was the ring bearer. In this picture we were dancing to Billy Joel's "Just the Way You Are" and yeah...I loved him just the way he was. I still do.
I'm going to close this by saying how deeply grateful I am to everyone who has given me so much love and support, and to ask that you not worry about what you say to me because in the end I know it's all out of love, and it's all good. I guess the advocate in me just won't ever die. So maybe this isn't just for Hank, but for those living who may have a body that can't run or walk, or talk. To ask that you take a second look at those folks, or a third, and to consider that maybe, just maybe, there is nothing wrong there at all.
"I said I love you, that's forever
And this I promise from the heart,
I couldn't love you any better
I love you just the way you are."
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