Happy Birthday

Happy Birthday son. We love you and miss you.

Companions

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

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

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

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

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.