Just the Way You Are

Just the Way You Are
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."

A Year Around the Sun

A Year Around the Sun

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,


The Parting Glass

The Parting Glass
The State Fair was a Hank thing. In the past 33 years I can count on less than one hand the times I was there without him. I didn't know if I should go this year because I was afraid I couldn't handle it, but Dan, a friend of Hank's, works in the K9 State Police show, so on Labor Day our friend Meghan and I decided to go to see him. A day that I had dreaded turned out to be, well, magical. Very hot, but magical.  

After visiting Dan we meandered through the Horticulture Building.  I had such an other worldly feeling.  Not pushing Hank in his wheelchair at the Fair felt so empty and strange, but on we went and meander we did.  

We made our way to The Eatery where we bought a chicken tender meal, always a Hank Klueber State Fair staple.  We toasted to Hank with the tenders, and just sat like we would had Hank been with us. We were present with the people, and the noises and smells.  It was peaceful and the air felt thick with grace, like it had always felt with him.  We never rushed with Hank, it was always a moment by moment time.  So we sat, ate our tenders and fries, cried some, and sat some more. When we felt ready, we got up and moved on. 

We debated about going into the Art and Home Center to see the quilts, and the paintings and photography, and that great toy circus exhibit on the top floor that is always the same but has a beautiful old timey feel.  We decided instead to measure ourselves, and moved on to the Center of Progress Building.  On our way to the side entrance we saw a friend I hadn't seen since Hank passed. Linda works every year in the Pan-African Village, and we've always made it a point to stop and pay her a visit.  She shed some tears with us, sharing how it just didn't feel right without Hank there.  She said, "Hank DID the Fair!  And if he had a dollar for everyone who loved him he would have been a very wealthy man!"  My heart swelled.  I guess you never stop feeling proud of your kids.

The Dairy Building was our last main stop, because here was another place where we relaxed and stayed awhile. Here is where we would all share a gigantic turtle sundae that Hank would absolutely delight in, and sometimes a big ol' glass of sugary lemonade. (He had been on a strict diet for years, but on Fair days it was no holds barred.  We even devoured his favorite fried dough nuggets in his honor on the way out.  We toasted with those too.) So we sat quietly near the butter sculpture for who knows how long. We enjoyed just being there.

When we had first entered the Fair there was music in the distance.  We'd arrived just in time to hear a wonderful Irish group called The High Kings sing their last two songs.  Their final tune was  "The Parting Glass," and in retrospect I can see that it had set the tone for the day. It is a heart-stirring song about, well, parting, and it felt like Hank was singing it to us.  Hank had a lovely vocal tone, and I always thought that if he could have talked he would have had a beautiful singing voice.  Yes, Hank singing "The Parting Glass," maybe with a rousing chorus sung with my Dad who couldn't carry a tune in a basket, but who was always happy to raise the voice that God had given him.  I could picture Hank and my Dad, arm around shoulders, singing that poignant Irish melody.  The words shot straight to my heart. Hearing that song was a gift, and I will carry it with me forever.

Thank you Hank (and your Grandpa) for raising my heart with your song. Thank you for your incredible light, for your big and hearty life, and for the many magical, grace filled State Fair days.  

"So fill to me the parting glass and gather as the evening falls
And gently rise and softly call goodnight and joy be to you all."

Marty and The Birds

Marty and The Birds

Hank's Dad, Marty, has been a bird man longer than I have known him.  When we were first together, he had his Yellow-naped parrot, Stanley, and was raising several parakeets and cockatiels.  Together we acquired a Meyers parrot that we named Ethel (after my mother) and a Senegal parrot named Frank.  Over the years Marty’s passion for raising the small birds waned, but Stanley, Ethel and Frank stayed on.  Now there is just Stanley, who is 38.

Shortly after our Hank passed away in March, Marty began being visited by a female robin. Indoor birds had always been his thing, but now here was a wild bird showing up at his bedroom window every morning and throughout the day...pecking at the window and making her presence known.  Marty named her Henrietta.  (Hank's formal name was Henry so this seemed like the right way to go.)

Every morning Marty would text me and give me a report of Henrietta's (now affectionately known to us as "H") comings, goings, and pretty insistent window tappings.  He had learned early on to recognize H by her specific features because she flew around him often throughout the day and would let him get quite close.  One day she even followed him into his studio by his garage, did a quick sweep around the room, flew out, landed on a little branch and just looked at him.  H had become his friend, and I was growing very fond of her by proxy.

A few weeks went by, maybe months (right now time feels foggy to me) and lo and behold H got herself a boyfriend.  Since Hank's middle name was Vincent, H's newfound love became Vince and yes, we called him V.

So everyday Marty watched as H and V flew around and started to hang out more and more in the tree by his bedroom window.  H had begun a nest there when she was first visiting but nothing came of it.  Now, with V on board, things got busy.

Marty called me one morning and told me that they were really serious about this new dwelling.  So Marty went into his garage and found an old tarp that had threads hanging from it.  He began pulling threads and laying them on the grass by the tree.  H and V  scooped up the thread pieces, added them to their nest, and Marty became a proud participant in the building of their home.

Things really started cooking, and H was staying in the nest most of the time.  She had learned to trust Marty, so she was fine with him watching her and keeping track of the soon-to-be family's progress.  However, when I was there I was very careful to stay back from the window because she didn't know me.  We wanted to do everything we could to keep our bird friends feeling safe.

What a time this was,  what a perfect, beautiful time.  Through our sadness at no longer having Hank with us, we'd found a little family of birds to focus on, talk about, and truly enjoy.  God gave us those birds...I am convinced of that.

Not long after H started sitting consistently in the nest, two little heads popped up.  I couldn't believe how quickly this was happening.  (Those of you who are real wild bird watchers will probably find none of this very fascinating, but to us it was all a miracle of timing, and of love.)  One of the heads reached up higher than the other, so Marty named him Stretch.  The other sort of bobbed up and down so, you guessed it, he was Bob.  Of course we don't know if they were male or female, but little boys they were to us.

Marty told me that if I wanted to see any of the action that I had better get over there pretty soon.  Having raised birds himself he had a sense of how fast things would go, so off I went.

I sat in a gray chair in Marty's bedroom and just looked at H as she rested so patiently and lovingly with her little ones.  I was content watching her, being with her in that peaceful way.  Suddenly V swooped in with a mouthful of worms, Stretch and Bob's heads came flying up and in their mouths went the food.  It was amazing to me, and I was so grateful that I was there to see that.

As I write this, I know that all of this served my mother heart in a deep way.  My longing for Hank seemed to have been given a place to land.

Marty gave me daily reports on the growth of S and B, and I went over about a week after they had hatched, sat in the gray chair, and watched.  I couldn't believe how big they had gotten.  But while I was there they were just sitting in the nest with their beaks wide open, waiting for one of their parents to return and fill them.  I couldn’t watch for very long...it was hard for me to see them so hungry and vulnerable, and I was worried about them.

As they grew, I was so afraid they would fall out of the nest.  Everyday I asked Marty if he thought they would be okay and he always said, “We’ll see.” And then one day there they were, sitting on the tree branch, NOT falling off and, in what seemed like a flash, they were gone.  There was no sign of them anywhere.  By God it appeared that they had made it! They had made it through this incredible, beautiful, scary process.

I guess somehow we all make it through this beautiful, scary process.  Some of us go though it longer than others, and some processes are scarier than others, but we all make it through to whatever our end is or might be.

I don't know how old Hank was when I stopped praying for him to be able to walk and talk.  I'd spent so many years watching the physical milestones of other children go by him. Gradually I came to accept, and I believe he did too, that his body was his body and that we would always work to make his the best body for him that it could be, the best of all of who he was that he could be.  So, my prayer for him became simply that he would live to his highest potential.  I think he did that.  

Now I pray that my loved ones and I follow Hank’s beautiful lead. I hope that H, V, S, and B do that, and I hope that you do too.

Happy Independence Day/One Step at a Time

Happy Independence Day/One Step at a Time
I wrote this blog ten years ago that has to do with my son Hank, and what freedom sometimes looks like.

One of the many things that I was afraid of when Hank was little was putting him on a bus.  The thought of that giant yellow vehicle swallowing him up and driving away with him scared the living daylights out of me. Therefore that child’s first ride didn’t happen until he was in first grade.

This may seem like a somewhat natural age for many children to start riding a bus, but Hank’s teachers were trying to convince me to let him take that ride ever since he was three years old and in pre-school. There was no way I was putting my three year old baby on a bus and watching him ride off into the sunset…or sunrise.  Just absolutely no way.

Now mind you here is a mother who never, ever intended for her child to even attend preschool.  My plan was to have my son home with me throughout his baby and toddler days.  We would go to the mall, visit Grandma and Grandpa, play on the playground.   I would bring him to visit my sisters, or just stay home doing all of the things that Mom’s and small children do.  We would draw and play with play dough.  He would grow to ask me questions and I would answer them.  My little one and I would have this precious time together, he in the grocery cart and me at the helm, until it was time for him to go to kindergarten. But God had a different plan.

Hank and I spent most of our days either in speech, occupational and physical therapy or doing carry over therapy at home.   They were spent with specialists in orthopedics, ENT, urology, and gastroenterology. And after three years of early intervention services at the E. John Gavras Center in Auburn, NY  it was time for pre-school at the Jowonio School in Syracuse, NY.  As hard as it was for me to admit, I could not give this not so average little bear all that he needed at home.  But no, he was not getting on that bus….no way…no how.

I am so grateful for the patience of Hank’s teachers and therapists at the Gavras Center and Jowonio. Although I know they would have wanted me to pull back sooner than I was able to in many areas with Hank, I always felt their respect and understanding.  They had a way of gently nudging me, suggesting, encouraging.  They stood with me while I found a blend of trusting my own instincts…and trusting theirs. They walked with me step by step, one day at a time.

And thankfully I finally did let Hank ride the bus.  I was always very obsessive about making sure that he was safe, but I tell  you I don’t think there was ever a happier bus-rider.  Hank loved riding the bus so much that he would scream and yell when he saw a bus on the street because he couldn’t be on it.  I suppose it was his first taste of freedom and he savored every second of it.

Almost twenty-three years later I am still living life with my boy step by step and one day at a time.  I am thankful to know that this is the only way I can do my life well.  If I stay spiritually connected I am guided to the next step, the next bit.  And if that step or bit takes a little longer than some might hope for, that’s okay….I’ll get there.

Thank you Hank for teaching me that.  You are the greatest thing that has ever happened to me.

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