Tuesday, December 29, 2009

Unchanging Days

Someone recently asked me what the hardest thing about our grief after losing Henry.  I responded quickly that the daily realization that nothing will change regarding him now is one of the most difficult things.

Every morning I wake up from the haze of sleep and for a brief second am filled with the prospect of a new day - that outlook quickly slips away though as the fog of the previous night's sleep clears and in the span of seconds, I'm overwhelmed at the prospect of another day without him.

I struggle hard to manage my expectations, my attitude.  After all, there are no guarantees in life.  No one says that each of us gets to have a happy, worry-free time of it.  There are certainly better times than others for us and whether we care to acknowledge it or not, there is always someone worse off.

I frequently remind myself that we'd never, ever, ever trade in the time we had with Henry to avoid the pain we endure now.  I try to focus on the good times we had, the privilege it was to be his daddy, and the person he has made out of me.

There is an unknowable welling up inside though sometimes.  An image of him, a toy of his, a sound or other memory and, like a glass dropping to the floor, my outward composure can shatter and I'm left with no capacity to will myself into submission, no ability to control my emotions.  And most times, there is simply no immediate explanation of what has brought me to that breaking point either.

For a long time I've grieved about what had to change.  Now I'm realizing I grieve too for what cannot.

Wednesday, December 16, 2009

Remembering at Christmas

It's been a bit of a struggle lately to come up with ways to remember Henry at Christmas.  It's the same problem we have in our daily thoughts of him, just that the holidays set a sense of timing about it all.  We want to think of him, but the thoughts inevitably hover on what isn't instead of what is.  I'd love to think that we could control that impulse - to continually be grateful and happy for the time we had with him without feeling a sense of lacking without him.

It sounds ridiculous, I know, but somehow I wish it were possible.  Like remembering when your children were younger, recalling how they used to throw food on the floor at dinner or how they used to say certain words in their particular way.  You remember, smile and place that little sticky note memory on the current version of your child and can be happy about the times you've experienced together.  I guess I don't really know what the comparison is, but there's just not a happy place to put those sticky notes for Henry.  We do smile when we think of him, but there is no future with which to be content in additional experiences.  It's an incredibly difficult balance to find.  Perhaps impossible...

Anyway, this year we've opted to spend Christmas in an unconventional way, doing something different than our normal traditions would entail.    It's worked for us to varying degrees at Halloween and Thanksgiving, so we're going to give it a try this December too.  However we still want to include him.  We've mustered the energy to decorate a bit.  We've put his stocking up over the fireplace.  At Thanksgiving, one of the mothers at the bereavement group we go to at Hopkins mentioned she lit candles and kept them burning all day in memory of children she's known who've died.  We adopted that at Thanksgiving as well and expect to do the same at Christmas.  It was comforting.

I wanted something a bit more for Christmas though.  I wanted to feel his presence a bit more tangibly.  I bought a small Christmas tree and we've decorated it with his ornaments and some of the small projects he painted.  It's turned out to be a really nice tribute.



So I guess we're finding ways of coping, strategies for managing grief, which I suppose is all we're able to do.  It's not going away, it's not going to magically one day be 'OK'.  We're not going to suddenly only have happy memories.  It's just not the reality of it all.  But I guess we'll be able to find ways to cope.

Tuesday, December 1, 2009

Scabs

I remember as a kid falling or sliding or otherwise injuring myself.  The wound would bleed, we'd wash it and care for it.  Then the scab would form.  For a kid, leaving that darn thing alone is one of the most difficult things in the world.  "Leave that alone!", warnings would come from mom that it would scar.

The holidays this year have been a bit easier to navigate than I expected.   It has been difficult to be sure, but we're managing.  We're learning coping mechanisms to handle the tougher moments.  We learned from a friend in the same situation that lighting a candle on a holiday in memory of their child was helpful.  On Thanksgiving we had a candle burning throughout the day.  The more public acknowledgement of Henry was comforting.

Changing things up completely has been another strategy.  While its good to remember and have traditions, when those traditions have such sharp edges, they're difficult to handle.  Halloween, we more or less avoided and tried to do the minimum possible to give the girls an enjoyable time.  Our pumpkin carving the day before Halloween barely qualified.  So far the girls haven't noticed that they were never lit.

Sometimes I liken grief of this sort to losing a limb.  It changes how we deal with everything.  How I wake, how I brush my teeth (a picture of Henry at Disney is next to my sink), how I interact with people, how I think of myself and my family.  It changes the fabric of experience in such a thorough way that we're forced to learn to live again in this new reality.  How do I keep him close while continuing to live without becoming calloused, distant or apathetic?

So I keep returning to that wound.  It looks like it's healing and then I pick at it.  Think of him.  Wade in his memory.  Stand at his still-perfect room now collecting dust.  See his ashes.  Longingly look at photos of this same time last year.  Remember how it felt to hold him and listen to his conversations.

I keep picking at that scab.  It will definitely leave a scar.

Friday, October 30, 2009

The Stuff of Dreams

I don't dream often.  I mean, I'm sure that I dream, I just don't remember them.  They say everyone dreams after all.  But I really, really don't remember them much.

For a long time, my memories of Henry have been relegated to those which I conjured on purpose or by simple association.  I'll see mandarin oranges and remember how much he loved them.  A UPS truck would go by and I recall how, for each one we saw, he'd point out and call them a 'present truck'.  Sometimes I would try to draw the lines of his face in my mind's eye, remembering how his hair felt or how his weight felt good on my lap while watching TV.

I woke up crying this morning.  I was dreaming he was there and somehow - in my dream - realized it wasn't real.  My dream-self began crying and woke my sleeping-self into the same state.  This was only the second time I've dreamed of Henry.  Only twice in the eight months since he's been gone.  Just two times.  It's painfully rare - and completely and utterly jarring.

The very first time was only a few weeks ago.  I woke up peacefully in the middle of the night, but then was unable to sleep and very suddenly couldn't contain myself.  The middle of the night was so surreal, dark and confusing and what I had dreamt felt so tangible.  I was possessed with grief.  Usually there is a voice in my head that can reason with my emotional self to calm down.  It takes time, but it's rational.  This was uncontrollable, a physical force shaking me from inside, punching me, not letting me go.    I'm normally I'd rather break down privately, this time I was grateful Tara was around.

Mercifully, last night's dream was not as powerful.  Merciful, yes, but regrettable too.  One of the hardest parts of Henry's absence is the lack of new memories.  There are no more of the cute moments that surprise you with cleverness, no more quiet times between us, no more hugs or I-love-you's.  Dreams give me something new about Henry.  I remember the dreams like I remember him being here.  I want them now.  But like everything when it comes to Henry, it's not simple.  The wonderful is wrapped with the sorrowful.  There are no clean lines, only a mix of happy and sad.

Thursday, October 15, 2009

...but Henry died.

For some time now, I have felt like life is mostly a series of distractions interrupted by thoughts of Henry. My time alone or with Tara and the girls feels like I'm 'backstage', an intermission separating the prior act and the next act, where we can acknowledge the pain, where I know we all think of Henry, and where we can recuperate in order to go on again.

The 'act' is not about being fake or pretending. It's just that there is rarely any recognition of what happened. Henry's life and death sit with me constantly and it takes energy and concentration and determination to make normal things happen. The conversation in my head goes something like...
  • "time to shower...but Henry died"
  • "time to get up...but Henry died"
  • "isn't this a nice day?...but Henry died"
  • "I'm so glad that Anna and Sophie are doing well in school...but Henry died."
It's not so discrete as that, but the sentiment is the same. The thoughts are nebulous and emotional impulses, less than conversations. Momentarily distracted, happy and content, appreciative of life, then somber and pensive, mournful, sometimes devastated all over again.

We've been going to a bereavement group at Johns Hopkins for families of deceased children. Like so many things right now, the impulse to participate was coupled with a strong desire to stay away. Can we really be emotionally supportive of others? Do we want to be drawn into others suffering. Do we want to dredge up memories that come when we travel to Hopkins, pass the Children's House, see the window he stood at and looked out of?

Our second session was last night. The girls have separate groups attended by social workers and other age-similar friends. They really enjoy it. They don't anxiously anticipate the negative things like we do, but really embrace the activity and specialness of it. I'm sure they feel a similar yet even more nebulous relief.

I'm not sure how to explain it but these sessions are like dedications. They provide concentrated time in which we can all look at each other, understand the pain and devastation in each others eyes and empathize with the daily plight of working through the day. The difficult thing is that although some of the group have been going for years, there are still persistent tears and the pain doesn't seem so much different. That is at the same time hopeful and depressing. Honestly, in some ways, I hope that never goes away. Somehow the pain feels like the only thing that keeps me connected.

And there is the contradiction that I cannot seem to get past. Henry's memory is so intimately tied up with the pain and suffering that trying to avoid one is avoiding the other. This is not only undesirable, but impossible. So these families that sit around our table on these nights all have the same thing in common. Life is good, we appreciate it. We are grateful for our health and our children in ways that some cannot...but our children our dead and that will never change.

Friday, October 9, 2009

Steady

I haven't felt much like writing lately. I feel obligated after my last post to let those who've inquired about us know that we're doing okay. Like most we've been dealing with busy fall activities and a bout of flu with the girls.

Emotions lately have been dampened. I'm thankful to a degree. The downs were harsh and painful, the ups too brief to be relieving. Now its less of the same. Waking to our reality each day is again becoming more routine, but I'm finding that I feel more vulnerable than I ever have.

October brings with it the beginning of the season in which we discovered Henry's cancer. Early signs that were only recognizable in retrospect. A child with incredible stamina, drifting off to sleep in the midst of a 10 minute car ride. An 'illness' that persisted far too long. October brings with it a multitude of dates which are reminders & anniversaries. Diagnosis, surgery, relapse, Disney.

We walk forward carefully, keeping these in our peripheral vision and hoping to acknowledge them without being bowled over by them. Wanting to remember because those memories include him, but knowing that in remembering we must conjure up painful details as well. This is the tough part to navigate - getting close enough to feel the heat but not so close to get burned.

Wednesday, September 16, 2009

Collections

Grief is an exacting lender.

Tara and I have just returned from a long, wonderful vacation during which we were so busy that thoughts of our recent trials were relegated to a quieter corner for a time. The relief was noticeable but as our days wore on, our longing to be home increased sharply. Call it avoidance, call it indulgence, call it whatever - we let our attention to grief down for a while.

But all things have their due. The entry back to our daily lives has been like reliving the immediate aftermath of Henry's death. The coping mechanisms developed since February seem feeble again and the memories of how he sounded, looked, felt and the times we enjoyed have come back with a stinging pain. It's so viscerally confusing how loving and tender memories can bring on such desperation rather than comfort; how the anxiety and dread of forgetting can be almost welcome. It's such a balancing act - keeping things close with appreciation for the experience of Henry without suffocating with the expectations of what could have been for him, for us, for the girls. The two are intimately tied together and touching one, means painfully grappling with the other.

Being busy helps to distract from the process and thankfully feels almost normal but for a persistent undercurrent of latent emotion, waiting for the quiet time to dispose of its accumulation. Habitual action is soothing for a time, but when I pause to compare it's meaning in light of our loss, my motivation for it disappears. Getting up from the chair seems like an act of sheer will.

I really thought I was doing so much better than this and am having difficulty coming to grips with this recent upsurge of grief. Sometimes I tell myself that I don't want it to get easier, that this pain is the price of keeping his memory fresh and that I'm willing to pay. It feels wrong to avoid him, sometimes I cannot look at his picture despite a longing to hold him again, to have another conversation, to let him know we miss him so desperately.

Our time away came at high interest and now the collection is painful.

We have done this before and will do it again, this wrestling with grief. It has been my mistake in thinking for a moment that we may be beyond the worst. There is a deep process at work and I feel all I can do is let it be what it's going to be.

Saturday, August 15, 2009

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.

Thursday, July 23, 2009

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.

Wednesday, July 22, 2009

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.

Monday, June 29, 2009

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.

Sunday, June 21, 2009

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.

Friday, June 12, 2009

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.

Tuesday, June 9, 2009

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.

Friday, June 5, 2009

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.

Tuesday, May 26, 2009

Healing

We had a lovely evening with the girls last night. We returned home after a long weekend of travel, an afternoon visiting with family and then relaxed by enjoying some card games with them before bed.

They'd attended a weekend camp put on by the American Cancer Society for siblings of those with cancer called SunSibs. The counselors are former attendees in many cases and the staff are social workers and hospital child-life staff. Last year was their first time going, right near the beginning of Henry's radiation treatments. They both anticipated this year for the last month by recalling fond memories of swimming, pranks, songs and activities.

Dropping the girls off on Saturday morning was a oddly disconcerting experience. We recalled what was happening last year - just starting Henry's radiation treatments, preparing for more separation, more hospital time, the unknown. When I recall past times during Henry's treatment I have enormous empathy for our past selves, wanting to comfort them, tell them we're doing OK now, encourage them. Then I realized that the parents still standing there were quite possibly in that very place, right in front of me. Other parents were there with their surviving children as we were, many years out, making me wonder what that's like. I heard cell phone conversations about one parent swapping hospital duties with the other. This story continues to happen over and over again all the time - all over the world.

We picked Anna and Sophie up on Monday and, although visibly tired, they were happy and had spent a busy weekend enjoying their old and new friends and the love and companionship of those who cared for them by offering them a fun and carefree time. It made Tara and I very happy to see them confidently marching off to camp and returning with memories that we hope will continue to buoy them and give them another facet of identity within the cancer community.

Grief for me is changing again. I haven't cried as much recently. I can more often stand at the door of his room and imagine him, remember him and smile. I think of him and feel the clenching in my chest, but it has become more familiar to me now, that manifestation of grief. And most of the time, that grief has enough form that I can hold it without it spilling all over the place uncontrollably. It has begun to congeal into something that is still difficult to hold, but it's possible. Sometimes it is still collapses into pieces but I'm getting more accustomed to picking them up and understanding how they fit together.

Friday, May 22, 2009

Confusion

The time since Henry died has been many things. It's been free from cancer. There have been moments of great joy and moments of deeper sadness than I've ever experienced. We've been touched by the generous acts of love and support of community reaching far and wide as well as back into times of our past and have gotten a glimpse of the community that will take us into our future.

But it's also been completely disorienting. For the last decade Tara and I have been parents of small children. We'll be the first to admit we're not the most adept parents of little ones, but we enjoy it and have grown to appreciate the chaos and unpredictability they bring. Acceptance. They force you to be open to whatever experience the moments bring. Spilled milk, a funny face, tears one minute, laughter the next.

Henry was four, but still needed the kind of attention a younger child requires. Taking him to the bathroom, for example, was something he did for himself only very rarely. Simple jobs required attention and coaching. This was our way though. Our interaction became oriented around these jobs, these duties. These were the motions of our days.

Suddenly now, our youngest is almost 8. Overnight we've gone from attentive care to near independence. And while its something that parents long for when you're in the midst of the responsibilities of child rearing, you graduate out of it gently and come to appreciate the difference.

Sometimes now, I know I have so many things to do, many of them feel hollow and pointless. I can't keep thoughts in my head and have difficulty managing priorities. Small things overwhelm me and feel oppressive. I'm frozen by simple decisions and when I can finally decide I'm emotionally exhausted and often feel like I'm disappointing the people depending on me. My consciousness seems clouded by a thick fog and the effect is almost constant confusion.

This morning has given me a moment of clarity and with it the chance to think about things a bit more thoughtfully. Is this part of grief? Am I just tired? Am I still just looking for my balance? I'm sure this will pass but for now it's frustrating. The days are beautiful, school's almost out, and spring activities are almost over but life seems to be moving at light speed and I feel like I'm crawling with confusion.

Monday, May 18, 2009

Generosity Beyond Measure

This weekend's Henry's Hustle event was an incredible time. The Maugansville community displayed enormous support and compassion to the cause of pediatric cancer research and awareness all in Henry's name.

The fervor began to build on Friday as the news crew from our local TV station came to witness some preparation and to interview the organizers, the girls, and me. Here's a clip from Friday's news story.

NBC 25 Story on Henry's Hustle

Saturday morning's weather was brilliant until about race time and the skies began to open. We went ahead with the race anyway and the kids loved it. The Chick-fil-a cow came to begin the race and was instrumental in getting many other activities started as well.



After the race the weather began to clear up a bit and everyone was able to enjoy the activities. There was a wonderful tractor ride and the local fire company showed up with one of the engines that Henry loved to watch from the nearby ice cream shop. Many of the children's teachers sacrificed themselves for the cause in a dunk tank which was VERY popular!



There was plenty of carnival fare provided by local businesses who donated their profits back to the cause, a multitude of amazing cakes for a cake walk, sweets galore for the bake sale - all of which was a tremendous donation of time and resources. The school's music teacher and her talented band came to add a festive atmosphere to the day and played song after song of touching entertainment and joyful music. (One special song of which was a favorite of Henry's - The Sweet Escape, which he called the 'woohoo song'). One of the local families donated the use of their Moonbounces for the enjoyment of all, another very popular activity. There was face painting, balloons, remote control cars from RideMakerz, goldfish to win, and enough activities to keep hundreds of kids and their families busy and entertained for hours. And of course, there were two Alex's Lemonade Stands on site as the namesake for destination of all the funds raised.

Altogether it was just a terrific, wonderful and magical day. It was a show of such solidarity, community and compassion. Tara and I felt so very comforted to know that Henry's life and story continues to inspire people to reach out to those children touched by cancer, to challenge them to empathize and to act. It means that his short life continues to radiate out into the world with positive ramification and it just makes us so happy.

I feel at such a desperate loss of words to express our gratitude for the countless hours of volunteer time that went into this event to earn funds that those who gave their time will likely (and hopefully) never see the use of. I know that every cake that was baked, every phone call that was made and every minute of service went to help sick children and it was done out of such deep generosity. We're so very honored for it to have been in Henry's name.

Much credit goes to the preparatory work of the Maugansville Elementary School staff, PTA and the local Ruritan club for the use of facilities, resources and good old volunteer labor. I'm especially grateful for Jeremy Golden, the Physical Education Teacher at Maugansville for his idea, initiative and compassion that made Henry's Hustle a reality.


Sunday's News Article in the local Hagerstown Paper

Saturday, May 9, 2009

Henry's Hustle - Call for Volunteers

The Henry's Hustle event at our local elementary school is gaining momentum and is shaping up to be an outstanding event!


There are multiple activities being provided, including a 1-mile run (Henry's Hustle) to be started by the Chick-fil-a Cow, train rides, car racing from RideMakerz, a dunk tank, soccer shoot, cake walk, blood drive, many valuable raffle items and the enjoyment of a community that has really extended itself to be supportive of childhood cancer research and, of course, our family.

The scale of the event requires many volunteers for setup and execution of the day's activities. If you're willing to donate all or part of your time between 7am and 3pm that day, it would be deeply appreciated. The event itself is from 10a to 2p plus the set up and break down afterward. Send me your email address and when and or what you would like to help with and I'll forward it to the volunteer coordinator for the day.



Thank you in advance and we're looking forward to a wonderful community day helping to cure childhood cancers.

Thursday, April 30, 2009

Denial

According to many grief models, the first stage of grief is denial. It is also possible, as we've learned, to do 'anticipatory grieving' or grieving for the inevitable. We knew from the onset of Henry's disease that the chances for survival were slim. At least for me, once he began to have clean scans, then we bombarded his cancer with the strongest chemotherapy available topped off by radiotherapy, I became optimistic. He looked good, felt good - was good.

When he relapsed, we knew what that meant. I remember getting the call from our oncologist. "It's bad." I remember where I stood, where Tara was, my mood, everything. It was news that at some level, I think we eventually expected. We dreaded it, hoped it wouldn't arrive, but when it came, I didn't feel any shock. Just something I'd desperately hoped to avoid.

We had months to anticipate, to tell him we loved him, to see relatives, to enjoy the holidays - to hold him. We wanted to value every minute, each second with him. I feel very confident we did our absolute best.

When Henry died, I remember the awful stab of departure. It had been quick, but we'd seen it coming. It was painless for him, but difficult for us. We'd been as prepared as we could possibly be for the end and it had gone as well as we could have hoped for.

We knew full well what was going to happen. We'd told our families. Our girls knew what to expect. There was really no surprise about any of it. How could we possibly deny any of it?

The business of the memorial service and comfort of friends and family in droves, the purpose of readying for the service and of intensity of properly honoring his memory kept our minds occupied in a positive fashion and kept us going. We were sad. We recalled with tears our happy moments. We felt grateful for the love we shared with him and with those surrounding us.

Normalcy crept upon us but felt oddly hollow. We expected that too. How could we possibly feel normal as a family of four - without cancer in our lives - after living for so long with Henry and the cancer that was part of him? Yes, that too, we anticipated. It will take time.

The departure of cancer provided relief for us. Hordes of time opened in front of us; time to spent with our girls, to sleep, take long weekends, give back to our supportive communities, re-create ourselves with our new appreciation for life. Henry was gone, but he left behind a trove of lessons, gifts for us to learn from and incorporate into who we are to become. This is renewal. This is life. This is rebirth. This has become comforting to know he lives on so integral to the lives he's touched. A bounty of good, come from so horrible a thing.

So I dismissed denial. I understood what had happened. I knew my son had died of brain cancer. We had peace in that he didn't suffer. He didn't know he was ill and was happy until the day he died. Job well done. We managed through to the end with our marriage in tact, our family strong, our wits not too badly damaged and with a healthy appreciation of life.

But...

Each moment in this future which I anticipated is so real and so empty of him. Anticipating missing him is nothing like actually missing him. So many moments without his quirky sayings, his laugh or his gravity. Yes, his gravity. It's like his pull on our family is gone. We don't have to adjust for him any longer and it's thrown our center of gravity off fiercely.

I'm beginning to understand that, for me anyway, denial is not really about mentally or analytically accepting what has happened. I don't think I've been able to bypass denial with any amount of thinking. Denial for me has been physical. Until I'm in an actual moment and have the experience of not having him in that moment, my physical body cannot acclimate to his being gone. I really don't think my body has allowed me to truly process what has happened. I've found my brain reminding myself that he's gone. Replaying his death, torturing myself over the details as if to make myself believe it more wholly. I don't know what the function is of this physical denial. I don't know why. But the longer I walk this road, the heavier my steps are becoming. The weight of what has happened is beginning to settle on me. It's gradual, but it's heavy.

"Henry will not get another birthday" "There will be no masculine bonding" "You will not see him at 10 or 15 or 50" "You will not see him be a dad" "You will not see him play with his cousins" "You will not teach him to drive" "You will not see him graduate" ... "You will no longer have a son."

These things I must live with.

Forever.

FOR EVER.

And there's nothing to be done about it.

Perhaps denial is nature's way of letting the dust settle instead of overwhelming us with it at once. It's painful enough this way. I suppose it would be incapacitating otherwise.

So I've invited denial into my house for a time. I don't know how long it will stay and I don't know how or when to expect what's next. If there's one special thing I learned from my time with Henry, it's to accept what we're given.

Wednesday, April 29, 2009

Spring

As spring finally arrives, we are surrounded by the signs of new life. Warmer weather, buds on the trees and green grass growing fast.

On the day Henry died, my niece was born. My brother's 4th child, Eliza. A gift to let us know that life goes on, that in the midst of great pain there can be great joy. A happy commemoration to be recalled annually that will forever help to salve the sorrow of that day.

Today is Tara's birthday. We anticipate another life entering the world this day. Her sister's new baby boy is to be coaxed out today, a dozen days overdue, and while Molly may have really appreciated an earlier arrival, we couldn't be happier with the coincidence. A perfect gift from one sister to another in the wake of our tragedy. To make it even more perfect, they will name their child Keating, a tribute to Henry and a great and humbling honor for us.

Best wishes and all our love to Molly, Josh, Charley and baby Keating.

Monday, April 27, 2009

Henry's Dad

Last week I dropped by Henry's daycare to say hello and to give them a 'Henry's Hustle' poster among other things. The children were all out playing in the play yard and I went in to speak with Henry's former teacher.

I anticipated this, but relished it just the same. Henry's classmates come over to me and say, "Hi, Henry's Dad!"

They ask about him too. "Where's Henry?" Some of them know, and some of them don't. Like us, none of them understand - really. One of his friends said, "I miss playing with Henry." Me too.

They're all so innocent and sweet and loving. In the end, I received about half a dozen hugs from little arms around my neck as I bent down to say goodbye. I can't explain it, but it was like he was there. They loved him so....and still do. I just love the fact they still ask about him so much.

Sunday, April 26, 2009

Go Team!

From 20090426_PortToFort

Thank you to everyone who participated in the Believe in Tomorrow Children's Foundation Port to Fort Walk for team, "Life is Fragile, Love is Not". We had an outstanding turn out on a fine day and it made a wonderful tribute to our hero Henry.

Aside from being a terrific memorial and community event, our team had the largest turnout - 54 people! We were awarded a plaque and a permanent place on their annual trophy which displays the awards year over year. Next year our team will be remembered for your participation in 2009.



As for the Scheck family, we had a terrific time seeing you all and walking and running together for such a wonderful organization. Thank you again for your fund raising efforts and for your unending support of Henry and our family.

We're already looking forward to doing it again next year!

Here are the photos I took at the race! Click on the album below and enjoy!
20090426_PortToFort

Friday, April 24, 2009

Port to Fort

This weekend is the Port to Fort race in Baltimore to raise awareness of childhood cancers. I want to thank the multitude of anticipated attendees for your commitment to this cause and support in memory of Henry.

We can't wait to see everyone. There is a crane in front of the Museum of Industry (see photo). That's where we will plan to be if the crowd and specifics allow. Otherwise, just look for the 'Life Is Fragile' shirts!



From the website:


Packet Pick-Up:

Saturday, April 25, 2009
12 p.m. to 5 p.m. at Falls Road Running Store
6247 Falls Road, Baltimore, MD 21209
Call (410) 296-5050 for directions.

*In response to numerous questions, one person may pick up the packets for their family members, friends, or team. (In cases of team packet pick-up, please have a complete list of names with you).

Last Minute Packet Pick-up begins at 7:30 a.m. day of race at the BMI.


More Information: www.BelieveInTomorrow.org/P2F

Race Route:

Monday, April 20, 2009

Rain

The morning after Henry died I woke up early with a headache. I came downstairs because I couldn't sleep and reached into the medicine cabinet for some Excedrin. We buy the generic and I turned the bottle to read the label to make sure I was grabbing the right bottle. "Pain Reliever" it said. I crumbled to the floor and cried.

Most of the time now the pain is much less acute. This weekend, I was able to think of him. I saw all the little 3's running around the soccer field, talked to his former coach and was able to laugh and smile thinking of him out there with everyone last fall, enjoying his shin guards and his cue ball head and red #3 shirt running around on a beautiful day. Coincidentally this season, Sophie's team is red and - coincidentally - has #3 (her age group has the full range of numbers). We had pictures this weekend and as I knelt next to the team I remembered doing the same with Henry last fall. It was a good memory.



I got up early again this morning and spent the wee hours thinking and waking up. The weekend sun had given way to clouds and rain. As I returned upstairs to dress and saw the picture of him I keep near my shelves, I had one of the most vivid memories of him I've had since he's been gone.



I could feel the sweater he was wearing, feel his hair in my fingers, his arms around my neck, his weight in my arms and his little cheek against mine. I remember the day at The Little Gym when we saw the fire engine parked out front. We walked down and he was excited to have his picture taken with #4. "Because I'm 4!"

God I miss him.

It took me some time to collect myself. It's so difficult to hold those memories. I want them. I treasure them and need them to keep him close. But it's painful and there's no pill to relieve it.

Thursday, April 16, 2009

Henry's Hustle


The local Elementary School, Maugansville ES, where Anna and Sophie attend, have announced that they are planning a fundraiser in memory of Henry to benefit the charity of our choice. We've elected to have the funds donated to Alex's Lemonade Stand.

They've set up an online donation center at ALSF and have a website for the event as well. There will be a carnival, a race and a blood drive all to be held at the school on Saturday, May 16th.

We're grateful and exceedingly honored to be supported by the school and community in this way and are excited to enjoy the day with family and friends if you're able to attend.


Henry's Hustle Website: http://www.HenrysHustle.org
ALSF Donation Site: http://donate.HenrysHustle.org

Friday, April 10, 2009

Sometimes There Aren't Words

I feel different after Henry died. Sometimes I can't put thoughts together. I feel like doing something and before I can get myself up to do it I've lost the motivation. Not always, but sometimes. I've tried to be very accepting of these moods, I see them come and go like the weather. It helps when I can explain them, but sometimes there are just no words.

Sometimes I just feel like there's nothing left emotionally. I'm all cashed in, spent it all and starting over from scratch - emotionally poor. Sometimes the weight of things, the finality isn't really apparent. Like maybe we can find a satisfactory explanation of things, a revelation, and then things will make sense or be better. After six weeks of missing Henry, it's becoming more and more apparent that there are just no explanations, no resolutions, and trying to grasp at them is futile. Then there's just sadness and tears with no purpose but release.

It builds up sometimes and other times it is sudden. Sometimes it creeps upon me slowly and imperceptibly. I can feel it coming and there's no immediate reason for it. It's very physical the way it builds up, like a need - and then the crying, the release. It's become one of the only things left that can relieve the pressure for a time.

Sometimes it surprises me and is sudden. Being in a place where a forgotten memory surfaces and is pushed into my face. I'm reminded of a tender moment of being with him and it is painful. I'm troubled by the association of pain with his memory. I do wish it wasn't that way. I want to look at pictures of him and recollect how we were with fondness, not in such a longing way. Perhaps its too early. Yes, I think I just need to wait it out. Like a storm. This too will pass. But I miss my boy.

Monday, April 6, 2009

Three is a Magic Number



You don't have to guess.
When it's three you can see
It's a magic number.
- Schoolhouse Rock



This weekend was the opening weekend of YMCA soccer here in Hagerstown. Our girls have played for years. Henry played his very first soccer game there last season. His very first touch on the ball (perhaps his only touch) was a kickoff that went to the team's 'ringer'. She scored. His first touch led to an assist. I was standing there with my buddies watching and it made me proud to watch him out there playing the game I've always loved. He wore the number 3.

Henry was slight at the time, he'd just finished his chemotherapy, still had his 'tubies' in his chest and had no hair. He loved his shin guards, they were just so cool. "Hit them daddy." I'd hit them. He'd shrug his shoulders, "It didn't hurt at all," he'd say. He wore his shin guards, his soccer socks and shoes and his jersey - with number 3.

This season every child in the U6 group all wear number 3. There are no other numbers. Every field, every jersey, every color in that age group are all running around with the number 3. His number. Everywhere.

And after this season it will be no more. The number 3 is being retired for use in U6. Our friends and community have done this for us. It's just too much and we're so appreciative because, while we don't have our Henry this year at the soccer field with us, his presence is felt so very strongly.




 
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Monday, March 30, 2009

Update: Believe in Tomorrow Port to Fort Race

Tara and I are overwhelmed by the number of people registering for the Believe in Tomorrow's Port to Fort Race in memory of Henry! Thank you all!

When I initially published the information in a prior post, I wasn't very clear on details. I actually did not realize that the P2F registration allowed 'teams'. I kind of thought it would be an informal thing. As it turns out, there are now three "Life is Fragile, Love is Not" teams! :) Additionally for some it seems somewhat unclear how to register and ensure placement on the team.

I've called the Believe in Tomorrow Foundation to see if they can merge the teams to avoid confusion. If you have yet to register, I've included some instructions at the end of the post. While Believe in Tomorrow encourages it, they do not require fund raising.

Finally, with registration you will receive a Port to Fort T-Shirt. Additionally, I've designed a "Life is Fragile, Love is Not" shirt that you can purchase separately if you wish.

FRONT


BACK




Eventually this will be used for fund raising as well, but at this time these shirts are being sold at cost. If you want to purchase one of these, please go to: www.CafePress.com/LifeIsFragile

We look forward to seeing you all down in Baltimore at the Museum of Industry on Race Day!


Registration Instructions:

If you've already registered and are not on our team - no worries. I think its mostly a convenience and show of solidarity. If you'd like to fix it though - please call 410-744-1032 and ask to speak to someone about the Port to Fort race.

1. Go to the registration site: www.BelieveInTomorrow.org/p2f
2. Click 'Register Online'
3. Click on the link in the middle that says - "Join a Team"
4. Select the Port to Fort event.
5. Continue to follow the registration instructions. There will be a page that asks whether you are on a corporate or community team. Select 'Yes' but omit the team name and captain.
6. As you continue you will eventually be presented with a page from which to enter a team name. Instead of entering the team name, pick "Show all teams." (a small link under the search box.)
7. Select "Life is Fragile, Love is Not" In Memory of Henry Keating Scheck. This is the team with the most members of the three Life is Fragile teams and the one to which I asked them to consolidate.
8. Complete your registration information.

Friday, March 27, 2009

I Smile When I Drink My Coffee


Each morning when I make coffee now, I smile. I commonly choose a 'Diego' cup that he was given at Christmas last year. There were a pair of them and they came with hot chocolate.

Daily, before making my coffee, I would ask him if I could use his 'Diego' cup. After giving me permission, he would say, very consistently, "You know. I have two of those." He would raise his eyebrows and tilt his head like it was the very first time he was telling a stranger about his special mugs.

There was a time I forgot to ask him. He politely corrected me, saying "You really should ask before you use it. But it's OK."

Sometimes I'm overwhelmed by the need to see him, hold him, talk with him, explain things to him, love him, put him to bed...I miss him. But it's OK, because when I drink my coffee I can smile, remembering him.

Sunday, March 22, 2009

Believe in Tomorrow: Port to Fort Race for Childhood Cancer Awareness


Please join Team "Life is Fragile, Love is Not"

Register for the Believe in Tomorrow Port to Fort 6K run/walk for Childhood Cancer Awareness in Memory of Henry K. Scheck

Sunday April 26, 2009 @ 9:00am

Baltimore Museum of Industry, 1415 Key Highway
Runners and walkers of all ages are welcome. Fees include a commemorative t-shirt to the first 1,200 registered runners, a race goodie bag and a post-race party with music, food and beverages.

All race proceeds benefit the programs of the Believe In Tomorrow Children's Foundation.
Registration:

* $20 for the general public
* $10 for students, active military, Home Depot employees, and Believe In Tomorrow families
* ALL registrations are $25 on the day of the event

REGISTRATION LINK: http://www.believeintomorrow.org/p2f

Saturday, March 21, 2009

Hide and Seek

I remember when we were in the hospital with Henry, he so loved to hide. We'd leave momentarily for a bathroom break, for morning coffee or to get him a toy and he would insist before we left that we cover him up entirely with his blankets. When we'd return, we'd have to play the game. "Oh, my! Where did Henry go? I left him right here and now I just don't know where he could be!" And then he'd throw his blankets down and yell "Boo!" and we'd play scared like it was the most frightening thing, staggering and holding our hand on our heart, eyebrows up in surprise. He thought that was just about the funniest thing ever.

At home also there were several times that he would hide, and hide so well, that I really couldn't find him. He understood that when you're hiding you couldn't make any noise and we'd pretended not to know where he was for so long that it was like crying wolf when we really were looking for him.

It didn't take long to hit the minor panic mode. I knew he was probably fine, but where the heck was he? This was perhaps the first time he'd discovered the place under our guest room bed. It became his favorite hiding place and while he got that he had to be quiet when hiding, he didn't understand that finding new places to hide was also important, making later games a little less stressful for me. In fact, he liked this spot so well, that once I found little bits of a snack he'd left there, presumably from just hanging out some time before.

Laying on the couch the other day, I was drifting in and out of sleep. I found myself in that semi-conscious state before really waking up and I was reviewing key points in his life; his diagnosis, his relapse, treatment. I recognized this jumping around to various key points in his life as a searching. I could see my brain trying to figure out if there was some clue we missed, some turn we didn't take, some subtlety we didn't catch - seeking for these as if he would suddenly turn up like in a game of hide and seek. There must be someplace we haven't thought to look yet. My brain was still trying to keep track of all three of my children and trying in a sort of panicked way to locate him. Once I really woke up this was recognized for what it was, but how I wished it were true.

I wish I could just walk over and find him hiding under the bed.

Tuesday, March 17, 2009

Henry's Ashes

I went to pick up Henry's ashes today. I didn't expect difficulty. I've gotten fairly good at disengaging my immediate emotions and focusing on the tactical business at hand.

It threw me off however, as the box was placed in a bag and handed to me - that I couldn't carry it by the handles. It seemed somehow disrespectful Or pedestrian. Too ordinary. This was not a bag from Target. And then the slip began.

I lifted the bag to carry in the crook of my arm and felt the weight. I realized that I was carrying my son's remains...in a box, in a bag. But the weight. The weight of carrying something that was once him quickly overwhelmed me. I sat for a while in the car to recover before heading home.

Once there I took them upstairs. Tara and I decided to keep them in his room for now as we haven't yet settled on what to do with them.

I realize this isn't the easiest thing to read - or to think about. But it's what we're dealing with. I've hesitated writing for sometime now for that. Sometimes it's just too painful, too private. But there are many reasons for this blog and sometimes I just find it helpful for me to write.

Friday, March 13, 2009

Waves

The days immediately following Henry's death were mostly a blur. We busied ourselves with plans and preparation. While we could have found someone to do this for us, we felt it important to give ourselves over to creating something for Henry - something particular, something special, something uniquely him. This kept us occupied, physically, emotionally and psychologically. It was healthy for us.

We noticed a tangible release and exhalation after Henry left. Cancer was gone from our family once again. We were sad that it took Henry, but relieved to be free of the disease that affected us all so thoroughly. These feelings have been difficult to reconcile - the lightness that comes with completing our journey with cancer and the sadness that accompanies the departure of our son and brother. Fortunately for our grieving, we can now rest secure in the knowledge we did everything possible. There are no regrets, there are no what-ifs, there is no anger. We're sad, we're scarred, but we still can love.

The day prior and that of the service were filled with emotion. Our family and friends came in droves and provided such complete comfort for us, our girls and our families. We were especially blessed with a new Scheck born to my brother's family on the same day as Henry's passing and we were honored to have her with us - so new and special. Her presence, innocence and purity reminds us that life continues. And it's beautiful.

As family and friends departed the fullness of our loss began to settle on us. We try to accept grief's presence and function, just as we grew to accept Henry's cancer. Sometimes it freezes us, sometimes it seems like it will never leave and sometimes its' absence is disturbing. Sometimes it comes without warning and sometimes it slowly creeps up on us and overtakes us. At times it is impossible to look at pictures of him. Other times I look and smile and am content. During it all we try to remember that each day will be different and that these are episodes that will come and go like waves.

Tuesday, March 10, 2009

Henry's Celebration Service

There are some from out of town that couldn't attend Henry's Celebration Service and I thought I'd portray as much of it here as possible. There are links highlighted in the order of service, below, for much of the content - including his slideshow. If you have photos that we could also enjoy please mail them to us at HenrysChallenge.memorial@picasaweb.com.




We felt strongly that we should celebrate rather than mourn Henry. He had a wonderful life filled with family and love from caregivers to grandparents, to close personal friends to, of course, us his immediate family. Although his life seemed difficult to an outsider, because this was what Henry knew, he became accustomed to it. This doesn't mean he enjoyed being sedated daily or having a tube out of his chest. It did mean however that these were passing inconveniences that didn't carry with them the expectations of 'normal' that most of us harbor.

He benefited from adult interaction in his ability to express himself. He enjoyed painting and reading. He never learned to write his name, but his vocabulary was incredible. Henry enjoyed games and cars and trucks. He loved to watch Oswald and Curious George. His favorite outdoor activity was driving his 'Truckie', mostly to the bus stop to get his sisters. He looked back on his time in the hospital fondly because of the efforts to comfort him, but mostly because he was loved. He was loved by his nurses, he was loved by his family and visitors and everyone that tended to him. We played with him, we talked to him, we read with him, we cared for him, we entertained him. Henry got to do so many things that were such fun for him.

I don't mean to gloss over the fact that Henry had cancer. This disease relegated Henry's lifespan to just 1679 days. We know it's not normal. We know it is not what any parent would wish for. But that was our Henry. We tried to love him all up in that short amount of time. So what better way to honor and memorialize him than to celebrate him. He was wonderful, he was beautiful, he taught us to love our lives with all we've got. He was our son, our brother, our grandson, our nephew, our friend - our hero. And now, he's our inspiration. Our inspiration to get up each morning and live and love and learn because he cannot.

So this was our tribute to him.

Memorial Service
Tuesday March 3, 2009
(program outside - program inside - photos)

Welcome

Sonnet 43, Elizabeth Barrett Browning

Prayer of Faith

Remarks, Beth Johns

Litany of Thanks

Reflections from Family and Friends

Remembering Henry's Life in Pictures

Closing Words

Balloon Release

Gathering

Cortland Mansion
19411 Cortland Drive
Hagerstown, MD 21742
Chaplain Beth Johns, Washington County Hospice

Sunday, March 8, 2009

A Life Remembered

My parents left this morning. The house is quiet and its just the four of us now. I didn't know what to expect to feel. I'm grateful to them for being here for us. Their leaving metaphorically ties up the last loose end before we must 'move on' and its hard.

I've noticed gray days are more difficult than sunny ones; quiet times more than busy ones. Sometimes, just as with his disease, things are matter of fact. He died, we've done what everything we could for him and to bring out of it the best things that we could discover in it. Other times we just miss him so.

This is not why I sat down to post. I sat down to let you know of an article in our local paper that was run today regarding Henry called, "A Life Remembered". Here is the link: A Life Remembered, Henry Keating Scheck

Thursday, March 5, 2009

Henry's Gift


I could never have anticipated the feelings that we experienced at Henry's memorial service. We were pleased that the space was filled with sunlight. We were happy to have Henry's presence through his memories and his special things. As people began to come - some strangers, some old friends, some new friends and our families from all across the country - we cried at our loss and laughed about our love and times with him. Our family felt hundreds strong that day.

We're so grateful to all of you who attended Henry's service, either actually or in spirit. We know of some, despite their best intentions and efforts, could not be there. We have poured over the notes and memories and loving tributes of support that were written to us through the mail or on the message cards from his service. They are touching and heartfelt and will serve as a tremendous memorial of Henry for us. We continue to receive them by email and in cards and we plan to preserve each one. I do have a favor to ask of anyone who took pictures - we'd sincerely appreciate any photos of the ceremony and especially any, any, any pictures you may have of Henry.

Henry's memory has been honored too by many donations to Cure Search, Believe in Tomorrow, Alex's Lemonade Stand and St. Baldrick's among others. We're very touched by the outpouring of generosity and love given to others in his name. Every cent brings us that much closer to additional comfort for families and to a potential cure for many childhood cancers.

As for Tara, me and our girls - we've been shown love and support beyond our wildest expectations. While we are still healing from our losses we feel comforted by the memory of our smiling, brave, four-year-old hero. Our hearts will be forever tender from seeing his picture, or walking by his room, from seeing a toy of his, or remembering how he acted or spoke. But we are slowly and gradually finding balance in the knowledge of his effect on not only our lives but so many we've heard from. It is difficult not to have joy in that. It is in that spirit that I'll be renaming Henry's Challenge to Henry's Gift.

I love you son. You did so well. And I'm forever proud of you.

Thursday, February 26, 2009

Celebrating Henry

We will celebrate Henry's memory on Tuesday, March 3rd. Please see the details below.

9am - 11am Family to receive visitors
11am - 12pm Memorial Service

Cortland Mansion
19411 Cortland Dr
Hagerstown, MD 21742


Afterward we will gather to visit and will have light fare. Please wear happy clothing. Henry will be present only in memory and our hearts. We have donated his body with the hope of furthering understanding of Medulloblastoma. We would love to have your children there, but understand if you decide otherwise. We will have set aside a separate space for them with toys, books and activities to be tended by volunteers.

In lieu of flowers, we would ask that donations be made to one of the following organizations from whom we had so much physical, emotional, medical and personal support.

The Children's Oncology Group at Johns Hopkins
CureSearch.HelpHenry.info

The Believe in Tomorrow Foundation
bit.HelpHenry.info

Alex's Lemonade Stand Foundation
alsf.HelpHenry.info

St. Baldrick's Foundation
StBaldrick.HelpHenry.info

It is becoming more apparent moment by moment that Henry touched many lives. Thank you for your anecdotes and inspiration, love and kindness. We'd love to hear of a special time or memory you have about our Henry and will have a collection place for anecdotes at the service.

Wednesday, February 25, 2009

Henry Keating Scheck


July 22, 2004 - February 25, 2009


Henry died this morning at 10:30a. Without fanfare or pain, his face went ashen as Tara and I sat on either side of him holding him and he gasped his last. We are surrounded by family and their love, perhaps the only thing that makes this bearable.

Please allow us the time to grieve privately for a few days. Calls right now would be overwhelming. Details on services will follow. Thank you all.


How can I see tomorrow without you?
My eyes are blurred for tears.
I know my travels must continue,
The hours will seem like years.

How can I feel tomorrow without you?
My heart aches, my head pounds.
Time will pass, they say it heals,
I'm not sure I like the way that sounds.

How can I love tomorrow without you?
Each step I miss you so
I hold your memory close to me,
I cannot let you go.

The secret lies in the love you gave
The wondeful times we had
Your fire will burn to pass these on
In me, my love - your Dad.

Short Breaths

Henry's breathing began to be more rapid and labored last evening. His throat and chest have a rattle now when he breathes. Sometimes he has the strength and awareness to clear it, but that is now infrequent.

We called the hospice nurse to visit. This is new and we wanted to make sure we are doing all we can at each moment to ensure his comfort. We all agreed that he seems comfortable for now and she advised us on measures to take should that change.

Each step right now is confusing, difficult and painful. We're in the akward position of wanting more of Henry but not wanting him to have to endure this for long. I remind myself we could rely on the hospital to help us through this, but to have him at home now has been so important to us all.

Tuesday, February 24, 2009

Wakeful Time

Henry continues to rest quietly for the most part. Occasionally he complains of a headache and the fact that he does so calmly with words tells us he is not in acute pain. We keep him on a steady stream of medicines for any of that pain.

He does arouse for brief periods here and there during which we can administer medicines and tell him we love him. He signs 'I love you' back - what a blessing he knows how to do that. He'll blow kisses. He excuses himself after each burb - which have become so very frequent - sometimes even in his sleep. He'll ask for juice with a sweet 'yes, please'. If he's awake for any duration, we begin reminiscing about his life to help him recall.

He had a very wakeful period today starting at about noon. He decided he wanted ice cream and sat up on Tara's lap eating. He appeared tired and we laid him back down only for him to say, "I wanna sit in Daddy's lap now."

We sat together and he ate mandarin oranges (or as he's says 'Mandarinin'). For a time we concluded he thought he was in the hospital, requesting to see the menu and insisting that he wanted to order himself. At the moment this began we were recalling the food service worker, Ms. Eunice, that was always so caring, taking Henry's orders and bringing his food.

For a time he also hallucinated about being back at daycare, this spurred on by a call from there with good wishes and thoughts from the children he calls his friends and the teachers he loves. He talked about rearranging the cots for nap and putting them away in the closet. I'm not sure if he was seeing this as he recalled it happening or if his capacity to relate memories now just takes place in the present.

After a time these visions became irritating, as if someone was bugging him in a bad mood. He threw his blankies 'down the stairs' but then cried that he wanted them back. They were just at the foot of the bed. At one point he seemed asleep, turned over toward me, opened his eyes and crowed like a rooster. These continued to become less pleasantly entertaining and more disturbing and upsetting to him so we medicated him for agitation and sleep. It was so nice and unexpected to have additional meaningful conversations with him.

Monday, February 23, 2009

Peaceful

Henry has slept for the last 20 hours, rousing once in the middle of the night to take a bit of morphine for his headache. We had tiny one-word conversations, telling him about recent visitors and notes from old friends. I sang the song I sing to him at night time and he completed the last word as he always has. We told him over and over we loved him.

Tara and I slept one on either side of him in his nest in our living room. I stoked the fire before laying down and the glow was as much heart warming as it was physically comforting.

Once again we find ourselves grateful for the peaceful manner in which Henry is able to painlessly rest. His agitation and mania seem to have mercifully subsided and he is simply sleeping. His breaths are sometimes quick and sharp, but mostly steady and very slow. There is no tension in his face.

The girls left for school this morning and each kissed him. Such good girls - so brave. We've spent a lot of time with them making sure they know they are loved and safe. We had a cathartic evening of crying around Henry last evening. Us, my mother, Tara's parents. It needed to happen. It was a good release for all and the girls seemed better for it today.

Sunday, February 22, 2009

Keeping Vigil

The last few days have been peaks and valleys of emotion. Henry has been sleeping most of the time, waking for an hour or two at a time, sometimes three or four. When he first wakes he's generally alert and responsive, can converse and is comfortable. We keep him on pain medication to avoid headaches which are the hallmark of the tumor's progression. As he tires, his requests turn to demands and he begins a manic litany of needs which get more and more frequent and unreasonable. This exhausts all of us, especially as sometimes his waking moments are at night.

During these wakeful moments we recall better times with photos and conversation. He still watches some television but his interest in that has waned recently. He does hum, sing or tap to the jingles for his shows, which brings a smile to our faces and makes me strangely content. He is drinking well and still enjoys some of the foods he always has; orange chips, chocolate, mandarin oranges. We spend our time attentive to him, waking or asleep, and to the girls, keeping them occupied and feeling loved.

It is not clear how much time we have with him. I read an account of survival at sea recently. According to the author, rescue must be viewed as an "interruption to the survival journey" meaning that to look for the end is to lose focus on what is required now. For now we will float, focus on Henry and await interruption.

Friday, February 20, 2009

Giving and Gratefulness

Henry continues to give and we continue to be grateful.

Yesterday he gave us the opportunity to spend all day surrounded by caring and loving family and friends, gathered in our living room around the fire. He had pain, agitation and discomfort for parts of his day, but with medication he rested, slept and had several hours of calm alertness during which he conversed and entertained. We cried, we laughed and were grateful.

After a blessedly full nights' rest, Henry awoke with complaints of a minor headache. We administered his morphine twice before it finally subsided. He wet his small bed we've moved into the living room and while changing the sheets, he sat with me. He has never been an overly affectionate child. He prefers to sit alone, preferring proximity to touch - but this morning he sat with me quietly. I have longed for this and he obliged me.

I have chosen the mantra of gratefulness of late, focusing on the things we have to be thankful for in the midst of this ... thing. I try to be careful about calling it something ugly or bad. There has been no intention in any of it, sad - yes, evil - no.

Anna had a tough time this morning. Sophie wouldn't go in to school without her either. We've kept the girls home for a time to allow them to normalize themselves again in hopes of sufficiently collecting themselves to do what will help them most of all - routine.

Henry lays sleeping calmly, his small chest heaving rhythmically while the background of Clifford dins in the background. It's a quiet and pain free moment and we're grateful.