Tightrope Walking

The weight of Henry's absence is difficult to bear right now. It comes and it goes in waves. Some days I can wake up and hit the ground running, think of him and smile and be OK. The last couple of days I go through the same motions, but I end up staring at the wall crying.

A physical wound stops hurting, even being wronged by someone seems to pass. Most of the time these things can be fixed. A band aid, an apology, but not this one. Sometimes when a quiet, pensive song is on the radio, I think of his beautiful face and holding his hand and talking with him, listening to his perspective on things and I just miss him so much it hurts like nothing else. I have flash memories of us in the hospital and of all he went through, of the phone call after his last MRI, of holding him near the end.

To push these things away because they're painful or to hold on to them because they were part of our shared experience with him is a tightrope that we have to walk each moment. Beautiful days of light, sun and being outside make me wish he were here to enjoy them. Seeing the lightning bugs this year, made me realize he'd never seen them and now he can't. The impulse to submerse myself in his memory is so powerful, but so painful.

I live by the pool,
of memories of you.
I dangle my feet in,
I touch the water with my fingers.

When I'm really missing you,
I wade into the pool,
of memories of you.
I've not yet learned to swim here,
so I stay close to the edge,
but it feels so good to be immersed,
just like when you were with me.

It's enveloping and I lose myself,
swimming in the pool,
of memories of you.
The cool water soothes my dry skin,
parched by time without you.
I turn and swirl the water,
my arms outstretched,
and I smile thinking of you.
But I've drifted too far.
I cannot yet swim here
and I cannot find bottom.

I panic and gasp.
I'm drowning in the pool,
of memories of you.
The water is deeper than I thought,
murky and dark.
I cannot breathe, my chest heaves.
The world is spinning and
I'm being drawn down.

Maybe I should close my eyes,
and lose myself in the pool,
of memories of you.
Relax and let it take me.

I find myself lying in the grass,
near the pool
of memories of you.
I'm drenched and exhausted.
But strangely relieved,
to have survived my swim.

I carry in my being,
the pool,
of memories of you.

Happy Father's Day

I've never been one to make long term friends. This may come as a shock to those who know me only through this blog, but I'm a pretty poor communicator. Henry's illness and the love, support and dedication of family, friends and strangers have brought me to a new understanding of what friendship means.

Being in the position of loss that we've experienced puts those in our circle of support in the awkward position of wanting to be supportive, but not always knowing what to say - I myself face this dilemma in my head. Suddenly I'll have a vivid image of him in my mind, I try to pause and acknowledge it, remember him, but then I've got to force myself to move on. It's debilitating and comforting at the same time. That's just the way it is. And its OK.

But the act of opening the door of conversation and letting us talk about our Henry, how our family is doing now and just telling, and in some cases, retelling our story is so helpful to us. Several friends' homes I've visited recently have Henry's picture still displayed. I don't expect them to keep it there forever, but the presence of his image stands as such a symbol of solidarity and remembrance.

So today I'm thankful for everyone who has in any way, offered their support to us. I find great comfort in my circle of friends. Whether we talk often or not you remain in my memory as part of my constitution and when I find the road a little rocky, I lean on you for support whether you know it or now. I feel a continually deepening kindred spirit with all my male friends. The bond we share as men and fathers is one I'm coming to value more and more as a quiet understanding of who we are and our role in our families and on this special day I wanted to be sure you all knew that.

Happy Father's Day.

Remembering

Occasionally I'll go into Henry's room, which has remained relatively unchanged since he died. It's got all of his things just the way they were left, some carefully replaced after they returned from his memorial service. I peeked behind his door today and saw his favorite shoes, a pair we bought him when he'd been so bloated with water after his relapse required high doses of steroids. They fit his over-sized feet then, but he loved those shoes and insisted on wearing them even though they wouldn't stay on. They sat along side his backpack which he carried with him back and forth to clinic with his special things in it. Usually gum, some cars, his 'shaker'(a music player) and his Leapster, which he rarely used, but always seemed to accompany us.

I knelt beside his bed and touched his Lightening McQueen blanket that kept him warm and comforted him so many nights. I looked at his blankets in which he'd twiggle his fingers in the loops each night as he slept. He knew each tag by heart and by feel. He could find his favorites in the dark. I remember lying with him on the the trundle beside him in his firetruck bed. He loved that bed. "I'm the luckiest boy in the world to have a bed like this." It made me so proud to have made it with him. It's really one of my favorite memories. He was so atypically patient that day. He watched carefully each step of building it.

As I knelt and remembered sleeping near him, I heard the tick of his fireman clock, given to us by a beloved neighbor and one of Henry's consistent confidants. I remember it stopped the day of his service. Maybe I didn't notice before that it had, very possible. But then it resumed again a day or two later. It just kept ticking and continues to this day. I don't remember it lasting that long before. It seems I always had to replace the batteries frequently. I knelt and listened to the tick tick tick. I looked up and remembered something else. The hands hadn't moved since the day it stopped. They didn't resume when the ticking did.

That's kinda how I feel.

Abundant Charity

We've been overwhelmed by the generosity of both friends and strangers since Henry's death. It's made us so much more aware of the private side of generosity, being the subject of it. We receive notes of support, gifts of people's time, and volumes of names from the charities we've designated referencing the donations made in Henry's memory. We're moved by the generosity of those touched by Henry's story and are comforted by the fact his life still radiates and raises awareness of childhood cancers in order that those walking that path have some measure of additional support and improvement in outcomes for it.

Most recently, there have been several family friends politely ask us if we would be willing to let them receive donations in Henry's name in lieu of gifts at special occasions, substituting birthday gifts for example with a donation made to Alex's Lemonade Stand. We humbly agree and are encouraged and amazed by the trend. One such event recently brought over $500 to ALSF.

The latest such event has touched us in a special way. A childhood friend of Tara's has requested that instead of gifts for her new baby, that donations be made in Henry's memory. Charity takes on so many facets. The love, care and support that this shows is reflected in not only those donating, but so deeply in the family asking. Thank you Sandee. Any request on my part for donations after all people have done for us is difficult for me, but if you are moved to donate for this, donations are requested to go to Henry's Lemonade Stand Site.

Regarding the abundance of charity of late is also an update on the Henry's Hustle event. The mile race was fun in the rain, the games were entertaining for all involved and the number of people who came to volunteer their time was astounding in itself. The donations are enough to blow your mind. Altogether charitable donations for the event exceeded $18,000. This included a substantial amount of individual donations solicited by the school children and their families, as well as corporate donations of food, prizes and profits from sales. I attended the ceremony on the last day of school where the top earners were rewarded and several of the male teachers donned dresses as promised as incentive for reaching (and far exceeding!) their goal of $5000. It was entertaining for all involved and a happy conclusion to a wonderful community outpouring of support.

Finally, among the several Lemonade Stands held in Henry's memory since his passing (Tri-State Community Health, Searcy Birthday Party, Henry's Hustle) there are a couple notable ones coming up.

• Cranberry Twp, PA - This coming Saturday, for those living in Pittsburgh or nearby, hosted by the children of a former coworker. Click here for more information or to donate.


• Longmeadow Mile Long Yard Sale - This was the original location we'd held our stand last summer with Henry. We will be doing it again over this 4th of July as will another friend along the sale route.


• Ongoing T-Shirt Sales - at www.CafePress.com/LifeIsFragile
  I intend to continue designing shirts & other items, all of the proceeds from which will go directly to Alex's Lemonade Stand. The current shirt has the following image:
  

We're ever so grateful and feel unable to express our thanks for the continuing generosity and dedication to the cause of awareness of and research for childhood cancers in Henry's memory.

What I Miss Most

What is it we love about our children? I'm sure its so many things. Sometimes I just find myself looking at Anna or Sophie and realize that I'm just lost in seeing them see things, observing their experiences, being thrilled by what surprises them and delights them.

After Henry died, I have felt very old. I haven't known how to describe the feeling except for that, 'old'. I feel like sitting quietly more than being active. I feel like being alone more than with people. I feel despondent and lacking energy. Not much surprises me and I grow tired of things quickly. My emotions are very thin and not interested in being used. I feel in many ways, that I look back on my life and feel 'done'.

But sometimes, I catch a glimpse of my girls being fascinated by something simple. The water in the shower running down Sophie's arm this morning, trickling off her little fingers...she watched it, made a funny face and said, "they're like hoses!", and giggled. Her smile consumed her face and so did mine. Her perspective is fresh and new and lovely.

This is what I miss most about Henry. His perspective was so unique. I suppose that's what makes us each special. We all want so badly for everyone to agree, but the differences are what keeps us alive. The differences are what keep us engaged and interested. I miss being able to see the world through his eyes. I miss you Henry.