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.

Collections

Grief is an exacting lender.

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

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

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

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

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

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

Assessing the Damage

I've just returned from a trip with the girls to Kansas to visit my family. We spent several days visiting my relatives and spending time with my nieces and nephews. The kids really enjoyed one another and played endlessly together. It was really terrific to get to spend some time playing with them in the pool and hanging out together. It's been an especially extended time of it as recently my brother's family was out our way visiting as well. The older children are so much more independent than in the past and its fun to watch them play together, becoming more and more adept at sharing and not fighting.

At day's end though, my mind wanders into the empty space where Henry would be. I remind myself that it wasn't meant to be, it was never preordained to have him around for these occasions. His life was brief and had a magic all its own, vastly different in duration, but not in magnitude. Like your tongue probing the hole from a recently extracted tooth, my thoughts go to that empty space. Trying to remember how he spoke, trying to interpolate what he would look like and how he would act. He'd be five. He would be taller. Days in the sun would have put light streaks in his hair. He would have loved seeing my grandfathers collection of trucks or playing all afternoon in the pool.

When something is lost, important or not, we take stock of what is gone. Insurance adjusters do it for their livelihood. When we hurt ourselves, we immediately extend our hand to touch the injury. You get a dent in the the new car and step back to see how it affects the shine. Then we adjust our expectations and move on. Some losses are more keen than others, some expected, some not.

While I continue to remind myself that there were no promises of what would be for Henry, or for our lives with him in our family, and try to content myself with the time we shared, I'm still drawn to the empty space, feeling it, touching it, probing it, wanting to know what it would be like. There's still an awful lot of life left in which to be assessing that damage.

Stages of Grief

We've unwillingly become more and more educated on grief. It's a strange mystery so much of the time. We didn't know what to expect for Henry's birthday yesterday. We knew it would bring difficult memories. It marks, in far too real a way, the passage of time without him. He would be five now. In fact this was a birthday he too anticipated. He would hold up his handful of fingers outstretched and tell us he was going to be 'five at my next birthday'.

So instead of letting grief do it's will yesterday we opted to be busy and do something relevant to Henry's memory. We ran into the day at full pace and hoped for the best. It turned out to be a manageable day, the anticipation of it, perhaps more difficult than the day itself. We traveled to Baltimore after stopping for a couple of toy trash trucks. I was proud of Anna as she wanted to help pay for them. The girls recounted several memories of him on the way. Sophie recalled how he loved spaghetti and he had a particular way of eating it which was always fun to watch.

The car seemed to remember the road down to Hopkins by rote, even the stop at Chick-fil-a for lunch. Every step of the trip was like pressing on a still-tender wound. Simple things like finding a parking spot and getting out of the car were absent of him. No stroller, no bags, no mask. I realized how frequently I pushed him into clinic when the walk seemed odd and I realized that I didn't have the vibration of the stroller under my hands.

Standing in the elevator, I remember the many glances we always received and the smiles when people would catch his eye. Anyone who knew what was on the 8th floor knew that children heading there were children whose lives were forever touched by cancer. I wondered what they thought of our family on this day.

We met with Henry's nurse and donated one of the trash trucks. It was a brief meeting but good to close the loop with her. It had been some time last fall that we'd seen her last as with all of the hospital staff once he was turned over to the care of hospice. It was tearful looking through the aquarium that creates a window between the play space for the oncology patients and the waiting room in which we stood now, no longer needing to enter that room, wishing to remember fully at the same time wanting to be gone from there soon. Realizing again with full force that every hour of every day there are children still suffering with cancer.

We walked the corridors together silently, all in our mental worlds. Tara undoubtedly doing as I was, remembering pushing him through the halls to occupy us during hospital stays, watching the new hospital be constructed, seeing it rain, seeing it snow, remember the conversations with him, our daily routines to radiation. It all flooded back so thoroughly.

We went up the elevator to the inpatient oncology floor and asked the girls to wait outside. We immediately were met by two of Henry's nurses and the Child Life specialist. Again we had a brief conversation, thanking them all and updating them on our current family business. Parents pass behind us in pajamas, gathering new linens from the closets as we did. Patients in beds are pushed through the halls with IV poles connected. We stood just down the hall from the room in which we spent nearly a month in. He rode around and around these halls and now the rooms were full with new patients and their families. It happens over and over and over again.

We left and drove to Canton to visit Casimir. We took a short walk through the streets, passed by the residence and silently remembered some of the times we shared together as a family and with Henry. My fondest memories of he and I are there. It was just us for a long time during his radiotherapy. Just me and him. This was the hardest part of the day for me. We passed along where we first caught a water taxi. He loved the boats in the harbor.

We made our way back to the car, got some ice cream for the girls and headed home as the sky opened with tears of its own. Leaving Baltimore the rain stopped as suddenly as it began. Dry pavement and wet cars. Another analogy to grief, just when you think an episode will last forever, it evaporates and the sun comes out. We gathered in Frederick for a nice picnic with Tara's family. All in all a nice day to remember Henry.

After Henry's relapse, moment by moment, I would take in his presence and remember all too painfully that I would be in this or that place or doing this or that activity without him soon. I knew there would be birthday's without him. I imagined the future and that helped me focus on the now. Yesterday we were in the same places doing the same things but now only the memories of him to comfort us.

What do we have control over at such times? Shall we submit ourselves to overwhelming despair? Should we ignore the memories of him to muster a false smile? Do we press down our emotions because we feel as though we cannot allow ourselves to be happy? Do we give ourselves over to grief? Does being happy negate our sadness?

I only come back to asking myself what can I control? What can I realistically influence? So I try let grief in when it knocks on the door and allow it to leave when it's done. The lesson Henry taught was acceptance and I'll try to honor that.

Finally, thank you to everyone who passed along their wishes for a good day and happy memories, dropped us a line or otherwise yesterday. We felt uplifted by the support.