Port to Fort

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

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

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

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

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.

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

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.