Stirring the Glass

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

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

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?