Assessing the Damage

I've just returned from a trip with the girls to Kansas to visit my family. We spent several days visiting my relatives and spending time with my nieces and nephews. The kids really enjoyed one another and played endlessly together. It was really terrific to get to spend some time playing with them in the pool and hanging out together. It's been an especially extended time of it as recently my brother's family was out our way visiting as well. The older children are so much more independent than in the past and its fun to watch them play together, becoming more and more adept at sharing and not fighting.

At day's end though, my mind wanders into the empty space where Henry would be. I remind myself that it wasn't meant to be, it was never preordained to have him around for these occasions. His life was brief and had a magic all its own, vastly different in duration, but not in magnitude. Like your tongue probing the hole from a recently extracted tooth, my thoughts go to that empty space. Trying to remember how he spoke, trying to interpolate what he would look like and how he would act. He'd be five. He would be taller. Days in the sun would have put light streaks in his hair. He would have loved seeing my grandfathers collection of trucks or playing all afternoon in the pool.

When something is lost, important or not, we take stock of what is gone. Insurance adjusters do it for their livelihood. When we hurt ourselves, we immediately extend our hand to touch the injury. You get a dent in the the new car and step back to see how it affects the shine. Then we adjust our expectations and move on. Some losses are more keen than others, some expected, some not.

While I continue to remind myself that there were no promises of what would be for Henry, or for our lives with him in our family, and try to content myself with the time we shared, I'm still drawn to the empty space, feeling it, touching it, probing it, wanting to know what it would be like. There's still an awful lot of life left in which to be assessing that damage.

Stages of Grief

We've unwillingly become more and more educated on grief. It's a strange mystery so much of the time. We didn't know what to expect for Henry's birthday yesterday. We knew it would bring difficult memories. It marks, in far too real a way, the passage of time without him. He would be five now. In fact this was a birthday he too anticipated. He would hold up his handful of fingers outstretched and tell us he was going to be 'five at my next birthday'.

So instead of letting grief do it's will yesterday we opted to be busy and do something relevant to Henry's memory. We ran into the day at full pace and hoped for the best. It turned out to be a manageable day, the anticipation of it, perhaps more difficult than the day itself. We traveled to Baltimore after stopping for a couple of toy trash trucks. I was proud of Anna as she wanted to help pay for them. The girls recounted several memories of him on the way. Sophie recalled how he loved spaghetti and he had a particular way of eating it which was always fun to watch.

The car seemed to remember the road down to Hopkins by rote, even the stop at Chick-fil-a for lunch. Every step of the trip was like pressing on a still-tender wound. Simple things like finding a parking spot and getting out of the car were absent of him. No stroller, no bags, no mask. I realized how frequently I pushed him into clinic when the walk seemed odd and I realized that I didn't have the vibration of the stroller under my hands.

Standing in the elevator, I remember the many glances we always received and the smiles when people would catch his eye. Anyone who knew what was on the 8th floor knew that children heading there were children whose lives were forever touched by cancer. I wondered what they thought of our family on this day.

We met with Henry's nurse and donated one of the trash trucks. It was a brief meeting but good to close the loop with her. It had been some time last fall that we'd seen her last as with all of the hospital staff once he was turned over to the care of hospice. It was tearful looking through the aquarium that creates a window between the play space for the oncology patients and the waiting room in which we stood now, no longer needing to enter that room, wishing to remember fully at the same time wanting to be gone from there soon. Realizing again with full force that every hour of every day there are children still suffering with cancer.

We walked the corridors together silently, all in our mental worlds. Tara undoubtedly doing as I was, remembering pushing him through the halls to occupy us during hospital stays, watching the new hospital be constructed, seeing it rain, seeing it snow, remember the conversations with him, our daily routines to radiation. It all flooded back so thoroughly.

We went up the elevator to the inpatient oncology floor and asked the girls to wait outside. We immediately were met by two of Henry's nurses and the Child Life specialist. Again we had a brief conversation, thanking them all and updating them on our current family business. Parents pass behind us in pajamas, gathering new linens from the closets as we did. Patients in beds are pushed through the halls with IV poles connected. We stood just down the hall from the room in which we spent nearly a month in. He rode around and around these halls and now the rooms were full with new patients and their families. It happens over and over and over again.

We left and drove to Canton to visit Casimir. We took a short walk through the streets, passed by the residence and silently remembered some of the times we shared together as a family and with Henry. My fondest memories of he and I are there. It was just us for a long time during his radiotherapy. Just me and him. This was the hardest part of the day for me. We passed along where we first caught a water taxi. He loved the boats in the harbor.

We made our way back to the car, got some ice cream for the girls and headed home as the sky opened with tears of its own. Leaving Baltimore the rain stopped as suddenly as it began. Dry pavement and wet cars. Another analogy to grief, just when you think an episode will last forever, it evaporates and the sun comes out. We gathered in Frederick for a nice picnic with Tara's family. All in all a nice day to remember Henry.

After Henry's relapse, moment by moment, I would take in his presence and remember all too painfully that I would be in this or that place or doing this or that activity without him soon. I knew there would be birthday's without him. I imagined the future and that helped me focus on the now. Yesterday we were in the same places doing the same things but now only the memories of him to comfort us.

What do we have control over at such times? Shall we submit ourselves to overwhelming despair? Should we ignore the memories of him to muster a false smile? Do we press down our emotions because we feel as though we cannot allow ourselves to be happy? Do we give ourselves over to grief? Does being happy negate our sadness?

I only come back to asking myself what can I control? What can I realistically influence? So I try let grief in when it knocks on the door and allow it to leave when it's done. The lesson Henry taught was acceptance and I'll try to honor that.

Finally, thank you to everyone who passed along their wishes for a good day and happy memories, dropped us a line or otherwise yesterday. We felt uplifted by the support.

Happy Birthday Henry

We've anticipated this day with some anxiety, not knowing how to celebrate and remember Henry. My memories of him wax and wane, but lately they have been pronounced. The difficulty with loss is that you want to remember every detail, but every detail is a sharp reminder of what is gone. It is so difficult to separate the memories from the wishing.

I went for a long walk this morning and decided that today I'd be happy. Tara is off today, we're planning to visit Baltimore to donate some toys to the Child Life group that was so helpful to Henry. I'm sure there will be moments of sadness, memories that will be recalled for the place we're in. But I will continue to remind myself that we had wonderful times and that even if given the chance we wouldn't have chosen not to help Henry through that. It was our honor and our privilege to be his family and he will always be our son, brother, grandson, cousin and nephew.

Everyday when we awake we have a choice to be happy. I'm not always successful and many days I forget I have that choice or cannot convince myself that I can make that choice, but remembering him today, I'm grateful for what I do have - loving memories of him and today with my family.

So today we'll remember Henry and be happy.

Happy Birthday son. We love you.

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.