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."
I guess I'll just let it all pour out, or let as much pour out as will fall.
My heart is aching and my mind is just such a mess right now. How do we bare the loss of Hank? How does any parent bare the loss of their child? Yes, I know, one day at a time, one moment at a time, one breath at a time. One ragged breath at a time. And we are doing it. One flippin' day at a time.
Hank's dad Marty and I plan to spend the next two days supporting each other on this marking of a year around the sun since our boy flew away, and it's just a muddled mess in my brain because it's leap year. Hank passed away on March 1st but it feels like tomorrow, February 29 is really the anniversary of his death. And what does it matter really? And yet it does. Dear Lord.
I would love to make this an uplifting post, and maybe I can a little bit. Maybe I can talk about the fact that Marty and I are living as fully as we can. The fact that what feels like electric shocks of the reality of Hank being gone still all but throw me across the room has not stopped me, has not stopped us, from really trying to stay in the game, because Hank would have it no other way.
Hank was a joy seeker. When he woke up in the morning it was as if he had never been asleep. He would make his beautiful sounds and grab his favorite book and just have at it. He knew that we would do everything possible to give him the best day possible. He just trusted that and hit the ground running (metaphorically of course because he couldn't physically run). But man did that boy run with everything else in him. He just pointed his heart in the direction of joy and worked out a way to get to it.
My prayer for myself is that I can continue to try my best to take a page from Hank's joy book, yet my mind still goes to those last days of his beautiful life and how much I miss him. I just want to see him and hold him, and tell him that I love him more than anyone or anything else in the whole wide world and I always, always will. (I actually used to say that to him all the time. Along with some really ridiculous things that we both loved like, "You are the king-a-me of my thing-a-me," and made up songs that came from God knows where in my imagination. But he loved them, and he would smile so big that I would tell him to be careful or he would swallow his head.)
Hank loved my ridiculousness. He got me, and I didn't ever have to be anything other my complete and total self with him...always. I love him for that. I love him for everything.
The other day a friend told me to keep crying because my tears are drops of love. And last night my friend Heather was praying with me and she said that God was putting all of my tears in a jar because that's how precious they are to him. And she cried right along with me. How can I not be grateful?
And I am, grateful I mean. I will never find the words to express my gratitude that I was given Hank to mother. He was the best partner I ever had. He strengthened me with his courage, his love, his persistence, and his laughter. He was my rock and my joy, and there is no measure for all that he did for me. I will try always, through my sadness, to remember how grateful I am that he was born to me.
Well, there you have it. I can't write any more. But I will say that I deeply appreciate all of you who will read this, and all of you in my life who have given me such incredible love and support this year. I guess Hank's words cannot be said too much..."Love wins".
Off I go to put a few more tears in my jar, then off I'll go to find a bit of Hank-joy. I'll keep doing my best, one day at a time because yes, Hank would have it no other way.
Love to you all,
Maureen
