Henry's Gift

Stirring the Glass

2011-12-27T12:46:00.000-05:00

Yesterday, the girls, Tara and I went on a cleaning binge. We attacked the panty and other various cupboards which house all the items that we refuse to decide whether to keep or not and instead opt to hide in the recesses of some closed cabinet somewhere. Imagine shoving the item into an already full space and quickly shutting the door. Out of sight, out of mind.

This has a wonderfully restorative effect on my mind almost as if the two were connected. Clearing the cabinets out, wiping down dusty surfaces, sweeping out corners, purging unused items and reorganizing those that remain seems to have the same effect on my mental storage as well. Clear cabinets mean clear thoughts. We'll see how long they stay that way...the cabinets or my mind.

Another task that we've put off is that of packing up Henry's room. Literally for years now, we've left his room exactly as it was the day he died. I've washed the windows and dusted occasionally, however the stuffed animals are still on his bed with his blankets, his clothes remain in his dresser and we pass by daily holding that one space the same as the world around continues on it's daily progression.

Keeping that snapshot the same has become over time a sense of comfort that I didn't anticipate. Months ago Tara and I had an exchange about it. "I dread the day that we're forced to pack up Henry's room." Tara, "I dread not being forced to do it." She meant, of course, not being forced to deal with something that outwardly appears that we expect him to return. As with many things that bereaved parents do, seeing it from our side, it takes on another meaning altogether. For us, stability is coping. Leaving his room the same for so long has allowed us to normalize, if that's really even possible, our lives without him. Not being forced to deal with it is stagnation, being forced to deal with it is painful. Leaving it the same for a time has enabled us to take our time with that inevitable day.

However we've had our hand forced just a bit with the pending addition to our family. Although it makes sense that if you've decided you've enough emotional capacity and desire in your life to accommodate another child after losing one, then it follows that you would probably have the analogous capacity to at once pack up old memories and prepare for new ones.

Easier said than done. After about 20 minutes of placing Henry's clothes, sheets and stuffed animals into large plastic bins and parting with some of his things that don't evoke memories, we were emotionally spent. Anna and Sophie both assisted in such a matter of fact way it was refreshing. Henry's ashes sit in the corner as we dismantled this space that was his, buffeted by the memories that come when you smell his clothes or see that shirt or recall him laying down to sleep at night remembering his voice speaking in the dark about those things that float through a four year old mind.

We decided then to stop and leave some for another day. We've learned to respect our grief. It can be unwieldy at times but we've learned to digest it in small bits. This project now though being in mid-stream, I've had to close his door. I'm not sure I can pass by with things strewn about his room in disarray. An old analogy comes to mind about silt in a glass. Once stirred it makes the water murky and difficult to see through. Let the glass be still for a while and the silt will settle to the bottom and things become clear once again.

A Day Spent Together

2011-02-25T07:25:00.000-05:00

There are many things to mourn on this day. We've lost our son, gone two years now. My girls have lost their brother. His grandparents, nieces, nephews have all lost their Henry. We mourn the loss of innocence, for us and the girls; the loss of not only who he was, but also who he was becoming.

In the face of this all I try keeping perspective on the experience we had of Henry and that can never be lost. I sometimes regret not having more pictures or more movies of him. I remind myself though that this is a consequence of fully being with him at the time, not separated by a lens, not looking forward or looking back, just looking and being.

So today we'll try to focus on now and the people who make our lives rich with meaning. Our family is supportive, as are our close circle of friends. There's not always anything to say or do, but just looking and being with us, acknowledging the pain and loss, but accepting that burden and walking together.

We miss you desperately dear boy. You're constantly in our hearts and thoughts and we love you dearly.

Happy Birthday

2010-07-22T05:47:00.001-04:00

Happy Birthday son. We love you and miss you.

Companions

2010-06-08T08:43:00.000-04:00

Sometimes I look around at my life as someone might watch a movie or read a book. Turn to the middle and try to make sense of what is going on, turn on the film 30 minutes into it and try to piece the story line together. I feel an observer more than a participant, watcher rather than watched.

Life seems so normal sometimes and yet very surreal. My family is wonderful, we have a comfortable house, things we need, friends, a community. We live a charmed life. But for that one happening.

It seems like it should have wrecked everything, left us in devastation, requiring years of psychotherapy or counseling. I remind myself that it happened and that was that. There is no changing it. It seems obvious that that children die each day. Could I have or should I have expected it not to be in our family? While it seemed a far chance, enough to ignore, at one time, it is no longer that way. We see life as exceedingly fragile now, so much so that days of ease and beauty are juxtaposed against knowing that it is, as a fact, temporary.

This could be seen as pessimistic fatalism, but the actual effect has been one of appreciation in light of the contrast. Life seems far more precious and wonderful in light of it's fragility. Things of once great importance have faded into minor daily distractions.

I sometimes ask myself, how can I, as a parent of a dead child, continue with life, continue to live life, really live?

Almost sixteen months after Henry's death, I find myself hovering in and out of awareness of him. My thoughts often settle on him when things slow, but when things are busy and moving, I can laugh, converse, interact - sharply aware that these are temporary. It doesn't make them less important or valuable, but quite the contrary. Forgetting momentarily then recalling the reality of it all, the impermanence of it all - and accepting that as simply true - allows deep, full breaths of the now.

When longer periods of time pass when I have suppressed the memory of him in order to function, it can suddenly come upon me, unsuspecting and flood into my head, debilitating me, even just for a moment. It's at times like these that I realize that forgetting for a bit is surviving. It's coping. It's normal and OK. I'm actually thankful for it's reprieve.

And when I occasionally permit myself to visit the memories of Henry, really submerse myself in them, it's overwhelming. For moments it feels like dying, hopelessness. But I know that is temporary as well...because then I forget again.

So I seem to have made several new companions in the wake of grief. I'm learning that they're not altogether unwelcome either. Forgetting, Acceptance, Pain, Memory, Appreciation, Impermanence. They have their merits as well as their faults.

Port to Fort Team Shirts

2010-03-15T15:46:00.001-04:00

If you're planning on participating in the Port to Fort race this year and would like a team shirt, I finally came up with one I thought suitable for kids and adults. I wanted it to honor Henry and also to be colorful and happy. I've marked the items up $5 each which goes directly to Alex's Lemonade Stand Foundation.

You can find the shirts at:

http://www.cafepress.com/lifeisfragile

Some Updates

2010-03-12T12:46:00.000-05:00

There have been several things I've been meaning to share here recently.

Alex's Lemonade Stand Foundation asked a while back (sometime last year) if they could use Henry's image in their Annual Report. It's come out and while not in hardcopy, they did distribute it as a PDF. Here is the page with Henry.

(click image to see large version)

The Believe in Tomorrow folks that do the Port-to-Fort (Sunday 4/25) wrote a note to some of last year's participants to ask a few questions. We were privileged to do so and our 'Life is Fragile, Love is Not' team features in their March eNewsletter.

Some of you have asked if we'll have a team t-shirt this year. I'm on it, but just a little slower. Check back soon and I'm hoping to have something for us to wear. I'm thinking of something special for the little participants too.

Finally, I have to thank you again for the support you've given to our family, particularly over the past year. We look forward to seeing you at the Port to Fort walking or running with Team: Life is Fragile, Love is Not.

Thanks.

One Year

2010-02-25T08:22:00.000-05:00

What day is this
Besides the day you left me?
What day is this
Besides the day you went?

So what to do
With the rest of today's afternoon, hey
Isn't it strange how we change
Everything we did
Did I do all that i should?
-Stay or Leave, Dave Matthews Band

About a month ago, I stood at the door to Henry's room as I'm occasionally inclined to do. It was a bright day, but the windows were dirty, so very dirty. Washing second floor windows hasn't been on our to-do list for a long time.

I got a bucket and soap, took the screens out and for the first time since Henry died, went into his room to 'do' something. I washed his windows and began talking to him. It felt good. I cried. It took me about 15 minutes, but they were now crystal clear and light poured into his room. It was so relieving.

It felt good to be close to him and I didn't want the feeling to go away. Looking back on what I did next makes me think of a time before cancer in which I would have thought the subject didn't have a good grip on reality.

I got into the car and drove to the craft store to find a wooden model, the kind we assemble together and then paint. I walked through the store looking, they'd moved them since last I'd been - or maybe I'd forgotten where they were kept. I found one and paid.

What would I have done next if Henry were here with me? I went to Chick-fil-a for lunch, ordered for me - and for him. Just the same way he always liked it.

I came home with the meal and set it up, cut up the chicken, and put ketchup on it. I dug out one of his old DVD's, Max and Ruby and put it on. I sat and ate. Afterwards I cleaned up and went to his room, laid on the floor next to his bed like I so often did at his naps and slept.

Tara asked me if it helped. It did. It really did.

I woke up today, knowing that in a few hours it would be exactly 1 year since Henry died. I remember all the details, how we slept on either side of him through the night, occasionally waking and looking at each other knowingly over him, the white Christmas lights illuminating glow from the mantle.

I remember waking early that day, unable to sleep any longer and sitting, waiting, breathing deeply. I remember Anna and Sophie hovering around him that morning. I remember taking photos of his hands, his feet, his hair, ears. I remember sitting watching the blood drain from his face and his gasps at the end.

I remember washing him, dressing him and carrying him to the door. I remember saying good bye and thanking him for letting me be his daddy. I remember them covering his face. I remember the last glimpse of the car taking him away down our street. I remember feeling empty.

We miss you Henry and we love you.

How does one commemorate the loss of a child?

Port to Fort

2010-02-18T13:25:00.000-05:00

You can register at

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

We had a wonderful time last year and were touched by everyone's generosity in giving of their time, support and funds to remember Henry and support those still struggling with childhood cancer.

Our team name is Life is Fragile, Love is Not

(see below)

we hope to see you there.

Unchanging Days

2009-12-29T14:02:00.000-05:00

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.

Remembering at Christmas

2009-12-16T08:47:00.001-05:00

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.

Scabs

2009-12-01T06:41:00.000-05:00

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.

The Stuff of Dreams

2009-10-30T10:43:00.000-04:00

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.

...but Henry died.

2009-10-15T07:43:00.003-04:00

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.

Steady

2009-10-09T07:49:00.004-04:00

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.

Collections

2009-09-16T22:00:00.000-04:00

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.

Assessing the Damage

2009-08-15T16:26:00.000-04:00

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

2009-07-23T09:47:00.005-04:00

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

2009-07-22T08:49:00.006-04:00

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

2009-06-29T07:22:00.004-04:00

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

2009-06-21T10:04:00.003-04:00

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

2009-06-12T14:06:00.003-04:00

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

2009-06-09T10:12:00.006-04:00

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

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

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

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

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

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

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

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

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

What I Miss Most

2009-06-05T08:46:00.005-04:00

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.

Healing

2009-05-26T09:17:00.004-04:00

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.

Confusion

2009-05-22T08:12:00.003-04:00

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.

Generosity Beyond Measure

2009-05-18T08:18:00.007-04:00

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

Henry's Hustle - Call for Volunteers

2009-05-09T07:13:00.005-04:00

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.

Denial

2009-04-30T06:34:00.005-04:00

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.

Spring

2009-04-29T09:16:00.003-04:00

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.

Henry's Dad

2009-04-27T08:42:00.000-04:00

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.

Go Team!

2009-04-26T12:54:00.004-04:00

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

Port to Fort

2009-04-24T08:48:00.004-04:00

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:
Port to Fort 6k Run/Walk
Find more Runs in Baltimore, Maryland

Rain

2009-04-20T10:26:00.006-04:00

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.

Henry's Hustle

2009-04-16T10:10:00.006-04:00

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

Sometimes There Aren't Words

2009-04-10T12:40:00.003-04:00

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.

Three is a Magic Number

2009-04-06T08:38:00.008-04:00

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.

Update: Believe in Tomorrow Port to Fort Race

2009-03-30T16:04:00.003-04:00

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.

I Smile When I Drink My Coffee

2009-03-27T07:53:00.003-04:00

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.

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

2009-03-22T20:21:00.004-04:00

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

Hide and Seek

2009-03-21T07:46:00.005-04:00

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.

Henry's Ashes

2009-03-17T14:12:00.003-04:00

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.

Waves

2009-03-13T09:38:00.005-04:00

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.

Henry's Celebration Service

2009-03-10T15:31:00.023-04:00

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

A Life Remembered

2009-03-08T12:02:00.004-04:00

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

Henry's Gift

2009-03-05T09:19:00.006-05:00

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.

Celebrating Henry

2009-02-26T08:37:00.008-05:00

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.

Henry Keating Scheck

2009-02-25T15:02:00.004-05:00

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

2009-02-25T06:10:00.003-05:00

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.

Wakeful Time

2009-02-24T15:09:00.004-05:00

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.

Peaceful

2009-02-23T07:53:00.003-05:00

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.

Keeping Vigil

2009-02-22T08:52:00.003-05:00

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.

Giving and Gratefulness

2009-02-20T08:48:00.003-05:00

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.

Difficult Day

2009-02-18T18:56:00.004-05:00

Henry vomited in his sleep again last night and had another mild seizure. He complained all night of headaches that we had difficulty controlling until morning when we'd given him more morphine in 8 hours than we've had to the entire time he's been taking it.

After he was finally able to rest, he slept on the couch for hours, waking pleasantly. This pleasantness quickly turned to irritability and agitation which persisted throughout the evening. I took him up to bed around 6pm and he fell immediately asleep.

It seems clear that we've passed the tipping point of his disease. Previously his headaches have been manageable with small doses of morphine, sometimes even Tylenol. We anticipate some teetering, some easier days mixed with hard, but this difficult reality is beginning to permeate all things.

Conversations at Bedtime

2009-02-14T19:42:00.003-05:00

Laying with Henry at bedtime can be humorous and revealing. It's so interesting to understand what is going through his head. Most of the time these tidbits go unremembered because they're so often between midnight and six in the morning and they cannot be recalled during wakeful coherence.

I lay down with him tonight to put him down.

"Did you have a nice Valentine's Day Henry?"
"Yes, there was only one pinwheel." (referring to their gifts - he got the pinwheel)

-- long pause --

"Do you know why they call 'sugar snap peas' 'sugar snap peas'?"
"Why Henry?"
"Because they 'snap'."
(chuckling under my breath) "Good call man"

-- another long pause --

"I just don't know how those stink bugs get in the house..."
"Me either"
"They stink"
"They sure do"

-- long pause, I think he's asleep --

"Sweet dreams Daddy"
"You too Henry, Good night"

Rare is Precious

2009-02-12T19:47:00.003-05:00

Henry has been so, so tired lately. His sleep seems to be getting longer, his days shorter. He spends most of his time on the couch, nibbling and watching his shows, humming to the songs or answering the questions posed by the characters. He is sometimes coaxed into an errand, a painting project or some other off-couch activity, but he fatigues quickly.

Each night when we put him to bed, it seems like we're turning a page in the last chapter, nearing the end of the story. I feel like my kids asking for another book. More. Please more.

The reality of this is becoming more palpable by the day. Our visitors are more frequent, our conversations more urgent, our plans more tangible. In so many ways I feel like we're losing him slowly even now - his body is getting heavier with his eating, hiding his features behind his increasing cheeks. His occasional hobble toward the bathroom is practically his sole exercise. His nap schedule is more regular and lengthy than it has ever been. None of this is typical of childhood. His mental acuity remains in tact and he jokes and his wit is sharp. We feel lucky that his disease has been merciful to us this way.

When you were born, my love
A bag of precious gems were poured out to us.
Although they seemed innumerable,
we knew they were not, but refused to count
for they seemed so many and days so plentiful.

As they dwindle, my love
and as I am able to count them - shimmering in my hand,
and am forced to pay out,
one at a time,
to the passing sun,
they seem all the more precious, my love.

I watch the way they reflect the light,
How each is unique,
special, different.
I see my face in the reflection, my love.
And I hope always to find yours looking back.

One day soon,
the last sun will rise to collect its toll.
And I will reluctantly, sadly,
with an open palm
give over what was never mine,
but only lent for too short a time, my love.

I will miss you,
but will reflect lovingly on those gems
that we had the privilege to care for,
to witness and to tend.
For each of those gems have left me richer
than I can have imagined otherwise, my love.

For now, there are but precious few, my love
remaining in our care,
and while we wish for more, my love
We're ever so grateful for the one that is today.

Grateful for this Day

2009-02-08T19:38:00.005-05:00

I am extremely grateful for this day.

Henry slept well, woke happy, and played nicely for sometime. Later in the morning he agreed to come outside to enjoy the temperate day we were given today. We pulled out Truckie and he drove and drove and drove. We took a walk and were warmed by the sun. I couldn't have been happier following him down the street with the girls in the lead on their scooters. We were met by neighbors out enjoying the day and returned to our court to watch the kids play. We had friends and family over to share dinner, again Henry and his cousin and sisters playing on the floor with trains. He eventually tired, but really squeezed the life out of today.

I am extremely grateful for this day of sun and warmth, laughter and smiles, kids playing and family.

Fields of the Present

2009-02-07T08:58:00.003-05:00

Right now as I type this I'm sitting on the couch next to Henry. He's laying down watching Dora. He has just taken his own medicine, which, for the most part, he insists on doing himself. He slept fairly well last night - no anxiety laden interruptions, but he did wake several times during the night, almost sleep-talking, saying the sweetest things. His mind is still very keen. He notices small things and remembers details that confound Tara and me.

He went to his Little Gym class yesterday, he insisted. He mostly watched, but couldn't resist sitting on the blow-up runway as it was inflated. He promptly dismounted with a smile. He sat for an hour watching the kids run and play, the whole time giving me running commentary. "I like the dots on her pants" "Those rings are new" and occasionally, still seated, manipulating the props that the other kids do standing.

Everyone is, of course, at home today as its Saturday. I find more comfort in the weekends now than ever. I suppose that it's the girls' presence. They are so amazing at how they're handling all this. I'm learning better each day to live, just for today, not to worry about what things tomorrow or next week or next month or year will bring. The girls haven't unlearned this yet.

For now, things are comfortable. We're managing Henry's pain, which is still minor, but mood-affecting. We've begun occasionally administering Morphine which is extremely effective at pain management with an incredibly small dose - just a drop or two takes care of things for hours. It allows him to experience things care free and comfortably. He becomes more interactive and is able to be himself.

So we try to keep our time horizon in check. If we focus only on what is required for today, I can smile at what we have. This moment today, now, is all we have and that is enough. We learn to accept what cannot be changed. There are inevitably reminders of the reality of ours and Henry's challenge. There are plans to be made which are unavoidable. The mind wanders over to the pasture of the future, but we have to herd it back into the fields of the present.

Change of Plan

2009-02-04T10:06:00.005-05:00

The CT Scan was read yesterday and compared with Henry's prior scans, notably the one from December. The one spot noticeable then has doubled in size, clearing up any doubt about the efficacy of Henry's current chemotherapy.

Switching chemotherapy is not a clear cut decision as I think I'd subconsciously hoped. The tumor's rate of growth suggests that it's in a pretty aggressive stage. Despite a significant chance the medicines will not have the intended effect, we will proceed with a chemotherapy called Etoposide, a drug previously administered in Henry's initial stages of inpatient chemotherapy. In this incarnation it will be given given orally instead of intravenously and will be given over a significantly longer duration - three weeks out of a four week cycle. We will begin in a few days.

A tumor growing the way Henry's seems to be, is a bit like a boulder rolling down a hill. There's a certain point at which it cannot be slowed regardless of the means. If we've passed this point, we may be measuring his time in weeks instead of months. This has been the reality that has been extremely difficult for us to comprehend, even though we have known it to be coming for months and have known of the possibility for almost a year and half. I'm not sure a parent's mind can digest the texture of daily life without one of their children.

This news came on the same day that another of our little friends with the same cancer as Henry's passed away. Sophia's struggle with medulloblastoma was a particularly harsh one. A struggle that puts in perspective how we can feel fortunate for the twists of fortune that ease Henry's journey. To the Langford's we wish the peace that comes with knowing they did everything they could for her and the joy at having spent what time they had with Sophia.

Despite Henry's erratic sleeping schedule and intermittent agitation and moodiness, he has hours of perkiness in between his TV watching and couch time. Seeing him sit up, talk and interact with us, shows us the personality and spark that we so wish for. It's pure happiness to see.

Thank you all for your notes and gestures of support. For now, we're taking things moment by moment and want for very little in the way of creature comforts. Our family has been as supportive as we could hope for as have our network of friends and for that we're immensely grateful.

Resting

2009-02-03T09:59:00.004-05:00

Henry slept almost all night last night with a little help from Ativan. He woke at 6:45 this morning in a good mood and watched TV for a couple of hours. He asked to be alone, I took him upstairs and he dropped quickly off to sleep.

We should hear today from our oncologist regarding the CT scan. His sleepiness is worrisome to us. It seems the harbinger of his decline and that's very difficult to accept. We're of course hopeful that there are other chemotherapies that will make a difference for him.

Anna and Sophie have been great. They are very gentle with Henry and understanding of his erratic moods and demands; understanding of the disparity that exists in what we expect of him versus them. Their laughter and playfulness has lightened the mood and been very welcome and inspires Henry to join in.

Steady

2009-02-02T14:15:00.002-05:00

It's been a couple of days since Henry's seizure and while his mental acuity is returning to normal, physically he's not feeling himself. His energy level is considerably lower. He wants to be more active than his body will allow right now. Several times today, he's been motivated to play, and in fact has begun activities, only to resign moments later to the couch.

We've begun an anti-seizure medication called Keppra and we've increased his steroid to four times what his recent maintenance dose. This seems to be controlling his vomiting but has not yet piqued his appetite yet. It has started to agitate him and to disrupt his sleep even more - last night he was up for about four hours. This is taking it's toll on all of us.

We've postponed resuming his chemotherapy regimen for the month in order to allow a review of his most recent scan by our doctors in Baltimore. If the tumor is growing, we will opt for an alternative chemotherapy. If it's not significantly different, we will stay the course.

Tara and I are home today, trying to recuperate physically and emotionally. We feel like sitting and staring at the wall, but being busy is a helpful antidote.

Another Seizure

2009-01-31T16:41:00.003-05:00

Henry had another seizure early this morning. Around 3am he wretched in bed and woke Tara who was sleeping next to his bed. She called me after he was unresponsive. He remained so, open-eyed and intermittently shaking and twitching, for about 45 minutes. After calls with the Hospice nurse we administered some anti-seizure medication. Three or four minutes afterward he began returning to normal and soon after fell asleep with minimal interruptions until morning.

Hearing Henry's voice in the morning was instantly comforting and anxiety provoking. He was only partly intelligible. He was slurring his words and was slow to move. I sat him on the couch to wake up a bit in front of the TV. He was clearly not himself and upon discussing things with our oncologist, we opted for a trip to our local emergency room for a CT scan of his head to ensure that nothing other than what we guessed was at work. We got the girls off to Grandma's and headed over.

We're back from that visit now; only a partial day spent in the emergency room. Since neither the ER doctor or our oncologist had the benefit of seeing the current scan with the prior ones, the report was less than meaningful. We received a copy which we will forward to Hopkins for review. Until then we're glad to be home and to have Henry returning to himself.

Seeking Balance

2009-01-25T15:26:00.004-05:00

I have to say as a general rule that when there are gaps between posts, usually things are going well. Thank you all for your emails and calls with concern, but generally, all is well.

We took off last week for a road trip to Kansas to visit my folks and extended family. Because we've not been able to plan far ahead, we decided to drive. I was a bit skeptical at how kids that are accustomed to traveling at most 60-90 minutes occasionally would deal with a 19 hour, two day trip, but things went very well. We spent four days with at my parents house and had many visitors and also lots of down time. We got lots of great pictures and I'm eager to post them but the time since we've returned has been busy.

I have to admit, too, that the blog is strongly associated with Henry's illness; with working out feelings, with communicating urgent news, and with documenting details and memories. Recently, both Tara and I have been allowing ourselves to get caught up in the flow of daily life. His medicine has become so routine, that we don't even talk about it. I set it on the table, he takes it, we're done. The coming round of chemotherapy will be a bit harder, but 5 days is blessedly short. Visits from the Hospice workers are also becoming anticipated and routine. The kids enjoy their visits and see them as family friends more than social workers and nurses - really a terrific bunch of people. I would never have believed that life could look and feel so 'normal'.

Which I suppose is why, right now, that there are days when things are going so easily well but my head feels filled with sludge. Our family is maturing, Henry included. He's (usually) not very needy, can play very independently for the most part, and is enjoying activities and visitors. We sit around the table at dinner and have fun conversations. Henry and Sophie saying absolutely cute and silly things. We laugh. We tease Anna about boys. It's miraculous and wonderful and perfect.

And it's about at that point - when I've momentarily forgotten, lost in the pleasure of seeing what every parent hopes to have, a happy family - that I feel that squeeze on my shoulder that reminds me of what's to come. There's a moment of anger, a moment of acceptance, a moment of 'why?', a moment of resignedness. Among the flash of emotion, there's a fragment too, of the potential lottery winner, thinking that maybe, just maybe it will just go away and I can have the boy back that I cry about when I look at old pictures. The carefree times before cancer. That maybe one day we can talk of it in the past tense. The dichotomy is a heavy one. I try to keep perspective and remain grateful that we have this time without worrying about what's next. This pain-free, happy, joyful, loving time to spend with "only" the anxiety of tomorrow instead of moment to moment pain. It's a balancing act. But we're truly grateful to be in that place right now.

Opportunity

2009-01-13T08:24:00.003-05:00

This morning I discovered an opportunity to make the voices of children with Childhood Cancer heard just a little more loudly. The incoming administration is providing citizens with a chance to offer ideas, the most popular of which will be included in a briefing book that will be reviewed for funding.

Please consider signing up at Change.gov and voting for the following issue to increase funding in search for a cure to Childhood Cancers.

Increased Funding for Childhood Cancer
http://tinyurl.com/curechildhoodcancer

Busy, Busy, Busy

2009-01-09T09:32:00.005-05:00

I had to sit down and write this morning. Since Henry woke up he has been going at 100 miles per hour. He's been running through the house, spanking Tara and I and then hiding. He chased his sisters around the kitchen this morning before school while meowing like a cat. He took a break to catch a little Curious George on TV, but now he's busying himself taping notes up to his workbench and 'fixing' things with a hammer and pliers. He's completely full of 4 year old energy today!

We're soon headed off to the coffee shop to read books until its time for his Little Gym time. Then we'll grab a quick bite at home and change into our swimsuits for some pool time at the YMCA. He's very excited and it sounds like it will be a good day to use some of that energy up.

Slipping

2009-01-06T23:20:00.000-05:00

The last few days have been really nice. We had a very normal New Year's Eve with friends and the beginning of the year has been low stress and uneventful. Tara has begun work again after a nice break and we're beginning to get excited for a trip to Kansas soon to visit relatives. It all seems very normal and for that we're incredibly grateful.

Ignoring the blog, (almost) forgetting to administer Henry's steroids, hosting the Hospice folks - but only occasionally discussing anything material - all allow us to thankfully deny the inevitability of things and maintain a 'normal' life. We've been so busy and Henry so full of energy that I unexpectedly found myself with a few moments in the house by myself recently. I sighed in relief to have a couple of minutes to think, but was wishing it away moments later. It seems the bustle keeps my mind off things.

There's a sort of guilt I have for how easy things are now and how I cannot seem to gather it all up completely enough. Henry's enjoying life, pain free, oblivious to the pending crisis. The girls are too, happy to be taking trips, enjoying their mother being at home more. I read with great difficulty, how other children with cancer are coping. In a moment I feel like its worlds away, empathy, then quickly realize that one or more of those scenarios will be ours. How to feel?

As for Henry, I can't say enough how spectacularly he's doing. He's sleeping relatively well and has an abundance of energy. He's maturing and gets excited about things. He's been actively recalling memories of times past, almost as if he previously lacked words to describe the events, but now recalls them with great detail. Today we ran around in the gym at the YMCA with friends. He asked me after feeling my forehead, "How can I get sweaty?" He raced back and forth to the water fountain in his attempts. The effect of seeing him run and laugh is so soothing to me. He gets lost in play and it is so so good, so 'child', so pure.

When he goes to bed at night now, I can't help but think in a very discreet way, that we've slowly slipped beyond another day. It's that way for us all, but I guess the sheer quantity that we think we have blinds us to the value of each and every one. I cry sometimes to think of how soon I may wish for the day I have with him at this very moment. I try to soak it all up but I get this overwhelming feeling of trying to absorb the ocean, of trying to hold back a flood, or trying to keep the sun from rising. Time quietly slips away and is gone and that's all there is to it. We only have this moment. And memories.

Tonight as I read my email before bed, I checked on another child we watch that has the same disease as Henry's. He's recently had a downturn. It was painful for him and I'm not sure I've let myself imagine what it was like for his parents. Tonight's post from his mother was to let everyone know that he'd passed on late last night. As inevitable as it seems it doesn't make it any easier to know.

I'm off to bed now and, having written, anticipate that my mind will finally let me sleep. I hope to wake up and slip into the din of normalcy again tomorrow. But hopefully, I can carry enough perspective with me appreciate the preciousness each and every moment.

Routine Scab

2008-12-30T06:06:00.003-05:00

Something has changed recently. I think maybe it's because of Henry's recent episode, which we've deduced with the oncologist, was probably a seizure. Less threatening, but no less frightening. He may have them again but they are likely benign. A relief.

But something is different. I think that seizure out of the blue has removed the scab that routine had grown back over this wound. We're openly bleeding again and it's painful. Every action I take right now is weighted with the perspective of what's to come and I wonder what life will be like in the coming year. When Henry looks at me, I try to drink in his eyes. My stomach twists in knots. I try on a smile, to forget, to get wrapped up in the kids activities again, but the weight is heavy.

I try to recall my own words and thoughts and perspective of just a few weeks ago. Focusing on the moment here and now - there's plenty of time to grieve later. But the elephant is standing in the middle of the room and it's difficult to see around.

I worry for Tara, I worry for the girls. Will I be what they need during this time?

This morning I was lying in bed next to Henry. We were just trying to wake up a bit. It was early. I just reached up to touch his arm.

"Dad?"

"Yes, Henry?"

"That's why it's good that we're nearby."

"Why's that Henry?"

"Because that way we can touch each other. That's why it's good to be nearby."

"Yes, it is Henry."

A Beautiful Day

2008-12-26T15:47:00.005-05:00

Christmas day here was a beautiful one for many reasons. Despite dispatching a 24 hour flu inside of 6 hours, Henry enjoyed himself terrifically. He saw that we had an early start, at 5:15. The girls followed by 6:30 and the present opening commenced. We started with the stockings from Santa and finished with the remainder after breakfast.

Henry responded to each present with "that's what I always wanted!" We had enough gifts for several Christmases. During presents Henry was a bit lethargic and fussy. Soon afterward he vomited. He needed several trips to the bathroom as well. We resigned ourselves to make the most of a Christmas with him being sick.

After a nap however, he was a new person. He arose and after our family arrived, perked up quite a bit. He spent the afternoon playing with his cousins, running around outside, shooting darts and generally being a rambunctious little boy. It was a pure delight to see.

Today was a perfect example of how each day surprises us right now. From being in the Emergency Room the other day to waking up on Christmas sick and ending the day laughing and jumping.

I put Henry to bed last night and rubbed his back as he fell asleep. He said, "Dad, how long are you gonna stay here?" I just didn't want to let this Christmas day end. "I just want to sit with you for a while," I said. "That's OK with me, either way, whatever you want." And I rubbed his back until he fell asleep on Christmas night, his sisters laying in the rooms just across the hall after a beautiful day.

Thankful for Another Day

2008-12-24T08:50:00.005-05:00

It's a quiet morning here at the Scheck House. Henry is watching TV. The girls are at their Grandmother's in Frederick and we are getting a late start after a very, very late night. We took him to the Johns Hopkins Emergency Department last night after experiencing stroke-like symptoms; he began vomiting while out with his sisters and a family friend at dinner. I came to retrieve him and found him doing fine, however on the way home he started to slur his speech badly and I could hear the drool pooling in his mouth as he spoke. I phoned Tara who had just arrived home and once there ourselves we observed him for a bit.

We watched for just a couple of minutes and began vomiting again, after which he became less responsive and appeared not to be able to move his left arm. Drool began coming out his mouth and while he could answer my questions at times, he was unintelligible or didn't make any sense.

During these last few weeks, and based on his feeling so good, we've begun operating under the assumption that Henry's last days would be readily seen coming - that he would have a slow and steady decline, during which we could comfort him and his sisters, give us the mental time needed to prepare. Suddenly, dozens of spontaneous questions came to me. "Is this how it's going to happen?" "Have I already had my last coherent words with my son?" "Who should we call?" "What do I say to the girls?" "Should we try to get help or let this take its course?" "Do we go to Hopkins or Washington County?"

During this episode, the girls came home from dinner to find us in tears and looking completely frightened. We've had discussions with them about things, but this caught everyone off guard. Thank goodness for Miss Lindsey - she was like a third, very stable parent to the girls while Tara and I sorted through the myriad emotions and decisions we were faced with.

We decided to head to Hopkins directly. We packed up the car, placed a couple of phone calls to the doctors and gave Henry some anti-nausea medication. The Hospice nurse had responded to my earlier call and was there to help us with the medicine. Upon heading out, Henry's symptoms began to subside, much to our great relief. He began speaking clearly again and looking himself. We left the girls with their grandparents and arrived in the ER about an hour later to find our oncologist waiting for us.

The comfort that Tara and I feel in our oncologist's presence is palpable. In tough situations, he is empathetic, knowledgeable and balanced. This evening, his being there ensured us of not only an effective, but brief stay. He sat with us, discussed options, played with Henry and read the CT scan once it came back. One of Henry's oncology nurses came down from the floor to visit with a coloring book and a sweet note. The child life staff member came to bring him toys.

The news from the CT scan was different than we expected. We expected this all to be pressure related from a growing tumor site. Instead we discovered that Henry had a small hemorrhage in his brain, likely as a result of the weak vessels the tumor creates as it grows. He had complained of a intermittent headache all day today in roughly the same spot - the right front of his brain.

We feel like we dodged a major bullet last night. There's nothing preventing this from happening again. There's nothing to say that it won't be worse. Or that it won't happen again. We forced to accept that any day may be the day, any hour the hour. In my head, I've imagined us all being at home around him, holding him, showing that we love him, talking about good times. I need to let it go. This is not about a romantic memory that we can hold on to forever. This is about making each moment count, making each minute one that is infused with love. If we can do this, it will matter less how or when.

So we wake up this morning, grateful for another day. Grateful for another smile, another laugh, just a little more Henry to be experienced. He spoke lovingly to his sisters and Grandmother on the phone this morning. He's watching his TV shows and eating scrambled eggs, with "just a little melted cheese and a little salt." Tara and I are tired, but not really caring much about it and are looking forward to reuniting with the girls and a holiday at home with our family.

Christmas Fun

2008-12-22T16:09:00.001-05:00

Henry enjoyed a holiday visitor today. His cousin Colin visited for the better part of the day, his family returning from Switzerland for the holidays. We enjoyed playing cars, fireman and decorating gingerbread men. It was fun to have a playmate at home, especially a boy! We'll see them again for Christmas Day and Henry's already looking forward to his return.

Christmas Memories

2008-12-21T20:32:00.005-05:00

Today was another really wonderful day. I'm compelled to document these days of wonder because I suppose I will one day look back on them and wish for them. I returned my mother to the airport today after a really nice visit. The kids made her feel amply missed before she even left.

I returned home to a strangely empty house, but only for a few moments, as Tara and the kids came into the door with Christmas dinner fixings. The afternoon became a relaxing time with a few games and the kids occupying themselves effortlessly (how often does that happen?). Henry is enjoying video games more and he's been playing Monster Truck 4x4 and getting pretty good at it. He enjoys it primarily because you can pick your truck and they include firetrucks and "andylances".

The girls enjoyed using Henry's matchbox car track and shooting candy from the launchers, trying to aim at bowls as targets. I can't say that I didn't help come up with the idea and also had a hard time keeping from making suggestions for additional elaboration.

We sat down to dinner and laughed and told stories. The conversation spilled into family members, our history, kids births, weddings - we got out picture albums and reviewed them thoroughly. It was, really, a perfect evening. We returned to the living room for some more monster truck racing in front of the evening's fire.

After one yawn too many, we shuttled the kids up to bed for the girls' remaining days before holiday break. Henry was practically asleep in the chair, but pleasant nonetheless. Everyone went to sleep without a peep. I can't explain the immense gratitude that I have for this day and the people I spent it with.

Golden Days

2008-12-19T19:42:00.007-05:00

I just laid Henry down to sleep tonight. We've been so thrilled at his energy of late that he's not only kept us busy, but it's been difficult to find the time to write before reaching the point of exhaustion. There are little bits of sweetness scattered among the routine events of the day, but today was such a quintessential Henry day that I felt I had to sit down to record it.

We started off pretty slow, playing on the floor with his matchbox car raceway. This is one of those toys that anyone can enjoy, like a modern day Rube Goldberg Machine. It provides hours of fun for the kids of all ages in our house (read - me too!). Henry and I began discussing the rest of the day. His regular weekly time at the Little Gym was today and we'd been wanting a mutual hair cutting. He suggested then that Grandma Linda, who he knows loves her coffee, could get a cup at the shop next door to the barber.

So that's just what we did. Henry got his hair cut for the first time since he turned three, sitting right next to me in the barber shop. It may seem silly, but it was such a moment of pride for me. He sat incredibly still, conversed with the barber, and received two lollipops for his efforts. We joined Grandma Linda for coffee and chocolate milk for a time while we awaited our time at the Little Gym. After imbibing we strolled down under the awning to avoid the rain. Henry had recalled earlier in the day that the awning existed and before even leaving the house, suggested that we would not need an umbrella. He had the whole thing very well planned out.

His time at the Little Gym was typical of his recent visits. He yelled, jumped, became adventurous with only a little prodding and had the time of his life just being four. Afterward, although cold to the bone for the incessant rain, we made our way over to Chick-fil-a. A day with Henry just wouldn't be complete otherwise. I ran a quick errand while he and his Grandmother had a nice lunch to complete our morning's adventure.

We got home and had plans for a nice quiet time before the girls and their whirlwind of papers and bags came in the door from school. I had forgotten a promise to get him over to his old daycare for a time. Before our coats were even off, we packed back into the car and dropped by for a mini reunion with his little friends and far-too-kind teachers. They'd shopped for little painting projects for him. He gave them all sweet hugs and then we proceeded to play and watch their Christmas train for a while. I tried to talk him into leaving to get the girls off the bus but, to my surprise, he opted to stay and play.

I retrieved him after about an hour of what was described to me as a pretty good time and which included painting, snack and some Thomas the Tank Engine trains. We came home and elected to exchange our Christmas presents with Grandma Linda after which we had a pretty quick but yummy dinner, Henry eating primarily the Chex Mix that he and Grandma had made. This mixture, by Henry's account, is 'the best'. Although each present he opened elicited a "that's just what I wanted" (ever the gentleman), the hit of the evening had to be the gum ball machine. Thank you Grandma!

So it was a long but fun filled day, very representative, in its parts, of all of our recent golden days. Busy and fun times, filled with bits of the preciousness which are Henry's looks and quips, his growing maturity coming through in unexpected ways, and us trying to take it in its fullness.

Santa Cow

2008-12-16T20:38:00.000-05:00

On one of our many trips to Chick-fil-a recently, we noticed that they had a Kid's Night promotion with their mascot, the cow, dressed up as Santa - and it occurred on a night when Grandma Linda was here too. Cookie decorating and storytelling were among the evening's fare, as well as reduced price kids meals. This was an event we could not pass up. Henry was keen on bringing his very own mascots who had to be in the picture taken with his camera. Altogether, pretty cheap entertainment.

Ho Ho Ho!

2008-12-13T12:30:00.001-05:00

Blessed Holiday Season

2008-12-12T20:41:00.005-05:00

The confluence of several things these last two weeks have kept the Scheck family here on the ropes. We had a rough cold sweep through the house leaving only Anna untouched. Sophie and Tara had the worst of it and fortunately Henry's immune system fought it off pretty well. It did have us sleepless for some time. Sophie's birthday is actually today, we had her party this past Sunday with all her friends at The Little Gym, who, I have to say, throw a wonderfully complete and worry-free party. Our big girl is now seven and as bouncy as ever. We just returned this evening from a dinner out at a local hibachi grill - a favorite entertainment spot. The usual Christmas mayhem has kept us hopping too - gifts, planning, crafts, cards - all wonderful traditions that have kept us busy and thinking wintry thoughts.

In the few hours left recently that haven't been consumed by the above, have been spent in recovery trying to keep up with an immensely energetic Henry. He looks great, feels great and is literally running around the house. He has resumed his weekly Little Gym class which he enjoys so much that he completely loses himself in it, screaming, running and throwing his hands in the air. It is my absolute favorite time of the week with him. It's so readily apparent that he is just being a kid. And while he still doesn't have the balance of a normal 4 year old, he runs and jumps and crawls on everything in sight as well as joining in with their group activities.

All of this December has been wildly distracting and, aside from our colds, very upbeat. Even the visits from the hospice staff have become a highly anticipated event as they, as much as Henry, have enjoyed playing and building rapport with him during this amazing time. Tara and I often comment to each other that we've simply never seen him look so happy and healthy. It's really a tremendous irony and one we're extremely grateful for. Not infrequently do I think about the wonders of modern medicine and feel unable to fathom what it has afforded us as a family, not to mention some of the best time of Henry's life.

So this weekend, we will venture out, weather permitting, to cut a real Christmas tree, in contrast to last year. We couldn't have live plants in the house due to Henry's weakened immune system and had to forgo one of our favorite traditions. We will trim the tree, hopefully just in time for Grandma Linda's arrival for a pre-Christmas week of visiting. In the meantime, we'll continue to ride the goodwill of the season and relax with each other, knowing it is a true blessing.

Strange Existence

2008-12-01T20:07:00.004-05:00

We had a lovely Thanksgiving with lots of wonderful visitors and terrific food and just a generally relaxing time. This is the time of year when I usually begin to wonder what I was doing the year prior at the same time, this year has been particularly easy to remember as were in the hospital for a good part of the last three months of the year and generally coming to grips with our new reality.

Our lives right now are not easily explained. We often look at each other wonder if the situation which weighs on us is real. Neither Tara nor I can recall a time when Henry felt better than this, perhaps but for the time immediately after his treatment ended. His mood, energy and outward health is so comforting it easily lulls into a dreamlike state of being - heightened awareness of the specter of what is to come and deeply appreciative of the ease and joy of life right now. I would never have been able to imagine coping with this state of things as well as we seem to be able to right now. I feel at times like I'm crossing a lake of thin ice, steady for now, but very high risk of slipping and crashing through.

Henry's days now are filled with playing video games, Christmas projects, painting, TV and, yes, eating. His weight seems to have stabilized at just under 50 pounds. Lately he's particularly enjoyed scrambled eggs, cashews and biscuits ("I really like that bread Daddy!") as well as Hershey Kissses. We have been slowly decreasing his steroids on doctors orders and he's been fine for it. He's taking his chemotherapy like a champ - only one more day of round two to go. We had some slight anxiety over the weekend as he complained of a headache most of the day, but it was light and did not renew itself the following day.

Another disarming change with Henry has been his willingness to participate in household chores and with the family. He independently set the table the other night with no prompting from Tara or me. He's enjoying playing with his sisters again and doesn't require me immediately at his side. It's really like he's playing catch up for all the developmental and behavioral delays that he experienced over the last year - end enjoying it. It's such a truly wonderful thing to be able to observe in him.

Happy Thanksgiving

2008-11-25T20:14:00.007-05:00

Over the last few days my brother's family from Kansas was visiting. Tara and I were so very happy that they made the effort to come out. Our kids particularly enjoyed their cousins, as they provide such fun playmates. Together they create such wonderful memories for all of us. Their departure this morning left us to a home town Thanksgiving, after which we'll settle into what we hope will be a long stretch of routine.

Henry was very relaxed and happy during their stay. He's feeling so much better. The treatment for his swelling after leaving the hospital recently was simply fluid restriction, but steadily over the last week he has lost the weight that came on so quickly. He's not been allowed to drink more than 16 ounces of fluid daily but has been urinating far more. It's strange to watch. At his heaviest he weighed a little over 60 pounds. He's now down to just below 48. He's looking so much more normal, no longer drawing stares from people when we're out. The puffiness around his eyes has diminished significantly with the help of a wedge we placed under the head of his mattress to keep gravity working for him instead of against.

At the same time, we've been slowly reducing his steroids, his appetite has been steady. Tara and I have the distinct feeling - and we don't mind - that he's really enjoying eating again. That's a pleasure we're just not about to deny him.

Henry cannot begin his next round of chemotherapy until his platelets begin recovering. We chose this situation to make our first use of Hospice services. Perhaps I'm being unreasonable, but sitting holding Henry, listening to him scream, while an unfamiliar nurse digs for a viable vein in his hand, is just not something I can handle very well. I guess I'm of the mind that his short life should have as little discomfort as possible. So I gave them 60 seconds and then politely asked them to pull it out, realizing that now tomorrow we'll make the trek to Baltimore to have a 45 second procedure. The nurses there are so artful, expert and complete with the way they handle these delicate situations with the kids. It will be familiar, it will be routine and it will take most of the day. But I'd rather keep him comfortable.

Recently I've seemed to notice a maturity and calm about Henry. He's very trusting of Tara and I. He no longer fusses much at inconvenience or changes of plan. He's grown to enjoy coloring, painting, and games that before he wouldn't touch. He seems laid back and happy, laughing far more than either Tara or I can remember. This combination is at once, immensely comforting and fulfilling and devastating. We're beginning to see him grow into his next phase of life, a confident, curious, interesting, talented and smart little boy. After years of babying, tantrums, little sleep - then chemotherapy, procedures, radiation and the hospital - we're able to develop a more mature relationship with him. He's polite and articulate. He's a pure pleasure to be around.

Sometimes things you say as a parent come back to get you. I'm fond of reminding my children that it's important to be grateful for what they have, instead of worrying about what they don't. This Thanksgiving, I'm content and grateful that we're all here to enjoy one another.

Day by Day

2008-11-21T20:41:00.003-05:00

Henry had a truly wonderful day. We kept the girls home from school today to spend the last full day with their visiting Grandparents. We caught an early movie - Bolt - then went to lunch. We talked Henry into trying Boston Market in lieu of his 5th visit to Chick-fil-a this week. He's now convinced that Boston Market has 'the best chicken!'

We were visited by the third round of Hospice staff today. The amount of assistance available is wonderful. It's surreal, though, watching him laugh and play on the floor while discussing things with Hospice services.

Fortunately our current needs from the services offered don't demand much. We count ourselves ever so fortunate that Henry is feeling great. He continues to drop pounds and looks better each day. He is really in the best mood lately, finding everything gut-busting funny and laughing like he can't control himself. It's the absolute best sound in the world. He and the girls sat and played Mario Cart this afternoon for hours. Being good sisters, they let him win each time (well, almost every time...) and finally he stood up, chucked the steering wheel across the floor, threw up his hands and yelled "Yeah Me!", mimicking Anna's phony narcissism, "I won every time!" He joked and played and teased all evening, chuckling the entire time. When it came time for bed, it was clear he was tired, but had enjoyed the day so much he didn't want it to end either.

It was really a magical afternoon and evening. It was cold, but we had a fire, candles, wine, good music and family all about, and again, the laughter was golden.

Finding Normal

2008-11-19T19:42:00.002-05:00

While we haven't fully settled into a rhythm again after the hospital, we're on our way. Henry is handling his fluid restriction in stride, the limiting of his juice being the only effective solution for the additional water weight he's carrying right now. Yesterday he was down a couple of pounds and we're hopeful that the morning weigh-in will reveal the same. He's limited to just two cups of juice a day, hoping that his body will look to the additional water in his cells as a source instead.

The chemotherapy he took at the beginning of his relapse treatment, Temodar, is scheduled for it's second round, but after getting his blood checked today, the doctors have suggested waiting a week to see if his platelets will begin coming up on their own as they're a bit low.

Today's visit was routine, an early trip into Baltimore, visiting in the playroom with old friends and new, and playing with favorite toys. The Big Event for Henry now that his chest catheter has been removed, is the blood draw. They have to stick his pudgy, water-filled arm and dig for a vein. Even the skilled nurses look to the experts in this case, and a hand tap was chosen this time. While painful to him (crying actually pumps the blood out faster!) it was skillfully and mercifully on target the first stick. Thank goodness for the experts!

After our visit, Henry and I took his accompanying Grandparents to visit St. Casimir, our second home during radiation and post-transplant. His memory is incredible. We recalled the water taxi, the outdoor courtyard, the roof of the building, the elevator, the shops - it was a very pleasant experience in the end.

This reminiscing brought to mind a recent conversation with our primary oncologist when first discussing Henry's relapse. "I guess this is the part of your job that makes you wonder why you went into this field," I asked after discussing our palliative care options and how things may evolve in Henry's coming weeks. His reply was clearly one he'd considered heavily before. "Really, its the people in this situation that we find we're able to help the most." And it's the truth. Good doctors, good nurses and a good hospital and staff have made all the difference in our journey to date. The fact that Henry can look back on months of treatment and want to go back, reflects the miracle of their care.

Home Again, Home Again, Jiggety Jig

2008-11-17T16:29:00.003-05:00

Just a quick update to let everyone know that we are home and happy. Henry is working on his overall sleep deficit, and his swelling is better today than yesterday. There's a long way to go and we aren't sure that we are out of the woods, but hey, at least we're out of the hospital!

The Right Direction

2008-11-16T19:22:00.002-05:00

A quick update from Tara: Bryan is down in the hospital with Henry tonight. Overall, he had a good day. We're were seen by a number of physicians, and no one seems to have a firm grasp on what's going on. Which is ok.

The goals of this admission were twofold: to make sure that we weren't missing something major, and to get the swelling to go down. I'm pleased to report that we have progress on both fronts. Essentially all of the testing done has been normal, with the exception of the low protein and electrolyte abnormalities that we already know about. This is great news. Even better, Henry's swelling seemed to respond to some of the IV medicine that he got in the hospital, and though he's still quite swollen, we appear to be headed in the right direction.

There's a little more testing scheduled for tomorrow (which I expect to be normal.) We hope to be discharged after that, with close followup this week with the oncology clinic.

The best news of all is that Henry remains in great spirits. He chatted me up the whole way to the hospital last night. He went on and on about all of the fun things about the hospital (the food, the nurses, the toys), and I think he was actually looking forward to being there for a little while. It's amazing that he's put aside all of those bad memories, but has been able to hold on to the good ones. What a trooper!

Progress, But Long Night

2008-11-16T08:52:00.000-05:00

Henry and Tara are resting in their own room on the oncology floor after a long night in the ER. Tara said that Henry was a delight, offering the nurses his Hershey's Kisses.
He'll continue to get tests and medicines to help diagnose and reduce his swelling. For now, they are comforted to be in a familiar, albeit medical, setting, attended to by the staff we've grown to trust.
I'm heading down to relieve Tara after leaving the girls with their grandmother. Hopefully we'll get to the root of the issue soon.

ER Visit Tonight

2008-11-15T23:49:00.002-05:00

Tara and Henry just left for the Hopkins Emergency Room tonight as after a couple hours of rest, Henry began coughing. This concerned Tara and I enough to decide that we didn't want to wait until the morning. I'm staying at home with the girls until the morning then meeting them down in Baltimore.

True to form, I told Henry and he was his little trusting self. He gave me a thumbs up as they were leaving.

Next Step

2008-11-15T07:07:00.007-05:00

We've been focused on Henry's facial swelling of late. He's not been able to see out of his right eye for days and now his left is beginning to swell. At the rate it's going it will also be shut tomorrow.

We've contacted the doctors and are awaiting word, but we expect to drive to Baltimore today for admission. The alternatives of nutrition modification or other medicines are too slow and we're fearful that waking up tomorrow and not being able to see will really scare Henry.

A redeeming factor is that he's been in a terrific mood, very agreeable, however a bit moody. He enjoyed a visit from a family friend yesterday, we built a birdhouse and painted it and went to see Madagascar 2 with the girls and Tara yesterday evening.

**Update** We've started applying pressure to his eyes with some good results, which may buy us a couple more days before we need to treat him more aggressively.

Clinic Visit Today

2008-11-13T20:46:00.003-05:00

Henry's swelling issue, has not yet subsided. We moved our clinic visit forward to today and made the trip to Baltimore. It was a pretty run of the mill day for Henry at clinic, however we did have an extended conversation with the doctor about the possible causes of Henry's swelling. His right eye continues to be completely swollen shut despite some attempts to correct.

Blood and urine were taken today to run some tests. Later this afternoon we received a call saying that some of his levels are off a bit. There is no definitive cause as yet, but we've been recommended to increase his protein intake and make a nominal attempt at reducing his sodium.

So we're focused on eggs and chicken nuggets for tomorrow and we'll try to reduce the chips. There are several other avenues to check out so we'll await further opinion. For now, while it's nothing urgent, he's at least comfortable. He's not complained at all.

Vacation Photos - Day 5 & 6

2008-11-13T20:44:00.001-05:00

Our second day in Disney we spent at their Hollywood Studios. We played the Toy Story Mania shooting game, met some very special friends, enjoyed Playhouse Disney and ended the evening with some fun back at the village. We can't forget the exciting stunt car display too! Loud but a huge highlight!

Monday - Disney's Hollywood Studios

Tuesday was a very special day at Disney. We explored the Animal Kingdom. We had a special friend spend the day with us taking pictures. (More to come!)

Tuesday - Disney's Animal Kingdom and Epcot

Vacation Photos - Day 4

2008-11-12T20:03:00.000-05:00

We started out the day visiting with Mickey and Minnie as well as several other friends from Disney. The time change kind of threw us off - so we tooled around the village, played in the pool, made pillows, played on the carousel and then split up in the afternoon. The girls and Tara went to explore Sea World, while Henry and I rested and eventually joined them for a showing of Shamu.

Sunday - Universal Studios and Sea World

Steroids

2008-11-11T20:53:00.000-05:00

Since his diagnosis, over a year, Henry has been the same weight - 20 days on steroids, he's gained over 15 pounds. The change has been extreme. You can see from the pictures here, taken only days apart what it's come to.

This image was a few days after our return from Florida. Making cookies with Mommy.

This one taken just today. The water retention swells his face and makes it so he can't see out of his right eye - he sleeps on that side most often. In the picture Henry is painting a 'project'. One of our favorite activities is putting together little wooden models from the craft store. He loves to spend time painting them. He has no patience for crayons, coloring or markers. But the boy loves to paint these things. He'll spend an hour painting and making sure he covers every bit of visible wood, sometimes with several colors. I just love watching the concentration when he does it. Sometimes you can catch him whispering to himself, "glob", meaning he's got a bunch of paint to spread around.

Vacation Photos - Day 3

2008-11-11T20:36:00.002-05:00

After a long Halloween night, we decided to take it easy and to take advantage of the wonderful resort which is Give Kids the World. We attempted a visit to Universal Studios, which was unfortunately closed for their last Halloween bash. This turn of events let us spend the evening relaxing at the village.

Saturday - A Restful Day at Give Kids the World

Vacation Photos - Day 2

2008-11-10T20:20:00.004-05:00

Our first full day at Disney included a busy morning at the Magic Kingdom. Breakfast at the Crystal Palace with Tigger, Pooh and Piglet, then off to some rides. In the afternoon - a rest and back to full tilt for makeovers and the Halloween Party, complete with a parade and fireworks.

Friday - Halloween at the Magic Kingdom

Vacation Photos - Day 1

2008-11-09T20:00:00.001-05:00

Thursday - Travel to Orlando

Vacation Photos - GKTW

2008-11-08T21:38:00.002-05:00

Lots and lots of pictures...it's taking a while to get them all into one place and organized. Here's the first batch - just a general smattering of the resort we stayed at which was ever so amazing.

Give Kids the World

More pictures with the family to come...

Home Sweet Home

2008-11-05T21:42:00.000-05:00

A good trip home and looking forward to sleeping under our own roof. I'm hoping to get some of our better pictures up tomorrow. G'nite all.

The Limo

2008-11-05T20:37:00.000-05:00

On the road and we're eating Chick-Fil-a. The driver said he's never stopped there before. I had to stop the drive thru line to get the photo - enjoy it!
While getting food with the girls, Tara was in charge of getting 'Nemo' playing in the limo. Henry's advice? "Push the power button Mommy. The power button always helps."

Back in Baltimore

2008-11-05T19:49:00.000-05:00

Waiting for bags after an uneventful flight.

Last Day

2008-11-05T12:45:00.000-05:00

Spent the morning packing and checking out. As seems typical here some special things were afoot.....but we have to keep some things for a surprise - more pictures in the coming days!
We have 5:30 flight, leaving just a couple of hours of shopping before we head back to the airport and limo ride home.

Closing Evening

2008-11-04T20:46:00.000-05:00

We arrived back at our villa to find gifts again - another stack of movies and a photo album.
Henry went down easily and we talked, laughed and cried a little over dinner.
I took the kids for one last ice cream treat tonight and now we're off to bed.

Last Tram Ride

2008-11-04T18:07:00.000-05:00

Leaving Epcot now for GKTW, our final departure from Disney. We will forever hold our time here close to our hearts.

GM Test Track

2008-11-04T16:05:00.000-05:00

Up for a fast ride? We're on the verge of entry to Disney's fastest and longest ride! Yikes!

Spaceship Earth

2008-11-04T15:53:00.000-05:00

A Break

2008-11-04T15:41:00.000-05:00

Sleeping well in the rental car as the girls and I explore....