tag:blogger.com,1999:blog-27571320685332266832024-03-04T23:20:34.841-05:00Henry's Gift"Life is Fragile, Love is Not."The Scheckshttp://www.blogger.com/profile/12523601434081898059noreply@blogger.comBlogger351125tag:blogger.com,1999:blog-2757132068533226683.post-28499122819884944502011-12-27T12:46:00.000-05:002011-12-27T12:46:37.739-05:00Stirring the Glass<div class="p1">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.</div><div class="p2"><br />
</div><div class="p1">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.</div><div class="p2"><br />
</div><div class="p1">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. </div><div class="p2"><br />
</div><div class="p1">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.</div><div class="p2"><br />
</div><div class="p1">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.</div><div class="p2"><br />
</div><div class="p1">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.</div><div class="p2"><br />
</div><div class="p1">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.</div><div class="p2"><br />
</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2757132068533226683.post-26501245907473503212011-02-25T07:25:00.000-05:002011-02-25T07:25:11.440-05:00A Day Spent TogetherThere 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
We miss you desperately dear boy. You're constantly in our hearts and thoughts and we love you dearly.Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-2757132068533226683.post-78927283716427944492010-07-22T05:47:00.001-04:002010-07-22T05:47:36.592-04:00Happy BirthdayHappy Birthday son. We love you and miss you.Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-2757132068533226683.post-81273011095718971222010-06-08T08:43:00.000-04:002010-06-08T08:43:35.649-04:00CompanionsSometimes 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.<div><br />
</div><div>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.</div><div><br />
</div><div>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.</div><div><br />
</div><div>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.</div><div><br />
</div><div>I sometimes ask myself, how can I, as a parent of a dead child, continue with life, continue to live life, <i>really live</i>?</div><div><br />
</div><div>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.<br />
<div><br />
</div><div>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 <i>thankful</i> for it's reprieve.</div><div><br />
</div><div>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.</div><div><br />
</div><div>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. </div></div>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-2757132068533226683.post-74913804119423468812010-03-15T15:46:00.001-04:002010-03-15T15:47:49.157-04:00Port to Fort Team ShirtsIf 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.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixHVH0VkOJf0HUPNw2VPs-K_pKFHXeIKNX2yHxUFZwrilwWQU05fR_njuQ5TaxG7QD_Pf2oIjW2XKibJl7kqILIXluUQKNrer1wWa-J6BPuUgd3gx5MKNItHL9_Og96tCoofrZEqjjl_UZ/s1600-h/Screen+shot+2010-03-15+at+3.44.56+PM.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixHVH0VkOJf0HUPNw2VPs-K_pKFHXeIKNX2yHxUFZwrilwWQU05fR_njuQ5TaxG7QD_Pf2oIjW2XKibJl7kqILIXluUQKNrer1wWa-J6BPuUgd3gx5MKNItHL9_Og96tCoofrZEqjjl_UZ/s320/Screen+shot+2010-03-15+at+3.44.56+PM.png" width="287" /></a></div><br />
<br />
You can find the shirts at:<br />
<br />
<a href="http://www.cafepress.com/lifeisfragile">http://www.cafepress.com/lifeisfragile</a>Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-2757132068533226683.post-14205668883466223262010-03-12T12:46:00.000-05:002010-03-12T12:46:07.345-05:00Some UpdatesThere have been several things I've been meaning to share here recently. <br />
<br />
<ul><li>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.</li>
</ul><br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8g7HDpAuEByGDRbIQxyKmHU-mdrbwNTBwK00LFjdifrfdRzx2wCijN5b8ALIRyVfRCTP7zNsc1EwNeZ9ddJNhdzyAe-J8JxVUg7qVNisD8W6cm-8x3MC450MBrPl4O7jGuP3sFD1bxKaq/s1600-h/henry-aslf-annual-report.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="208" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8g7HDpAuEByGDRbIQxyKmHU-mdrbwNTBwK00LFjdifrfdRzx2wCijN5b8ALIRyVfRCTP7zNsc1EwNeZ9ddJNhdzyAe-J8JxVUg7qVNisD8W6cm-8x3MC450MBrPl4O7jGuP3sFD1bxKaq/s320/henry-aslf-annual-report.png" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><span class="Apple-style-span" style="font-size: x-small;">(click image to see large version)</span></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: left;"></div><ul><li>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 <a href="http://www.believeintomorrow.org/enews.html">March eNewsletter</a>. </li>
</ul><ul><li>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.</li>
</ul><div>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 <a href="http://www.believeintomorrow.org/p2f/">Port to Fort</a> walking or running with Team: Life is Fragile, Love is Not.</div><div><br />
</div><div>Thanks.</div>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-2757132068533226683.post-49516972450049929472010-02-25T08:22:00.000-05:002010-02-25T08:22:02.922-05:00One Year<blockquote style="text-align: center;">What day is this<br />
Besides the day you left me?<br />
What day is this<br />
Besides the day you went?<br />
<br />
So what to do<br />
With the rest of today's afternoon, hey<br />
Isn't it strange how we change<br />
Everything we did<br />
Did I do all that i should?<br />
<div style="color: #ababab; text-align: right;">-Stay or Leave, Dave Matthews Band</div></blockquote><br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Tara asked me if it helped. It did. It really did.<br />
<br />
<hr /><br />
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.<br />
<br />
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.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZ4UNUNzwJNKw0qgI-BvgvF_DLka8DBF8hlEhexYGYoi_2eoRu94PweBBG3eLbeJZk6Oqmn2JLXJ1DGtmxuLpl-EPmDhRDarYXI2qZhObkSKWhPUeuu5jI01fjA9WuY3HaMWPPt3RBBFtE/s1600-h/IMG_7566.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZ4UNUNzwJNKw0qgI-BvgvF_DLka8DBF8hlEhexYGYoi_2eoRu94PweBBG3eLbeJZk6Oqmn2JLXJ1DGtmxuLpl-EPmDhRDarYXI2qZhObkSKWhPUeuu5jI01fjA9WuY3HaMWPPt3RBBFtE/s200/IMG_7566.JPG" width="200" /></a>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. <br />
<br />
We miss you Henry and we love you.<br />
<br />
How does one commemorate the loss of a child?Unknownnoreply@blogger.com19tag:blogger.com,1999:blog-2757132068533226683.post-35372208884032855172010-02-18T13:25:00.000-05:002010-02-18T13:25:34.658-05:00Port to Fort<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4ypYDgHFiLvXeBgDqY8Y9lOHmoBVl4KggU4D08ZrEHNH0YthmnoXoqxOzCYpPw1UqRylS9DfS6sway2PeXDRy9aNnKIFrQ9Ej1bhgyWm6c-7-rY81DbpjM9Bgy4URde_NXjUSsWpMr6XX/s1600-h/Screen+shot+2010-02-18+at+1.08.51+PM.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="86" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4ypYDgHFiLvXeBgDqY8Y9lOHmoBVl4KggU4D08ZrEHNH0YthmnoXoqxOzCYpPw1UqRylS9DfS6sway2PeXDRy9aNnKIFrQ9Ej1bhgyWm6c-7-rY81DbpjM9Bgy4URde_NXjUSsWpMr6XX/s400/Screen+shot+2010-02-18+at+1.08.51+PM.png" width="400" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4ypYDgHFiLvXeBgDqY8Y9lOHmoBVl4KggU4D08ZrEHNH0YthmnoXoqxOzCYpPw1UqRylS9DfS6sway2PeXDRy9aNnKIFrQ9Ej1bhgyWm6c-7-rY81DbpjM9Bgy4URde_NXjUSsWpMr6XX/s1600-h/Screen+shot+2010-02-18+at+1.08.51+PM.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: none; color: black;"></span></a><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-d2r2SSyROlU9x_UdHYbfpdSw3P0gvw03pkKtcvGVlP92wfBCZKPLpEF2LG7kpFIB-FabQp9BqUGl2tdrSZ0EEa0EpKRIm6YyD2avWG8M4vO8Mq15D_3zQNJEJ1C6FnzdIb1FEQ63-Hux/s320/Screen+shot+2010-02-18+at+1.09.07+PM.png" /></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;">You can register at </div><div class="separator" style="clear: both; text-align: center;"><a href="http://www.believeintomorrow.org/p2f/">http://www.believeintomorrow.org/p2f/</a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;">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.</div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;">Our team name is Life is Fragile, Love is Not</div><div class="separator" style="clear: both; text-align: center;">(see below)</div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrXKI9Y13HcxS41mRZpvV-7UzWP8R4D9SWOvWK_qGStwCEQmLVY5w1G4bhSFTkZ1JUMlIrN1Mrf6_7Ww0XazUMbsQhSlXmPztx8bZBKPloW00BIF-d1-q3v1_pUIygrvT1Y5PX8jRRRK9S/s1600-h/Screen+shot+2010-02-18+at+1.11.22+PM.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="75" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrXKI9Y13HcxS41mRZpvV-7UzWP8R4D9SWOvWK_qGStwCEQmLVY5w1G4bhSFTkZ1JUMlIrN1Mrf6_7Ww0XazUMbsQhSlXmPztx8bZBKPloW00BIF-d1-q3v1_pUIygrvT1Y5PX8jRRRK9S/s640/Screen+shot+2010-02-18+at+1.11.22+PM.png" width="640" /></a><br />
<br />
<br />
<br />
<br />
<br />
<div style="text-align: center;">we hope to see you there.</div>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-2757132068533226683.post-66197035290518174172009-12-29T14:02:00.000-05:002009-12-29T14:02:03.258-05:00Unchanging DaysSomeone 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
For a long time I've grieved about what had to change. Now I'm realizing I grieve too for what cannot.Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-2757132068533226683.post-72713635257469522232009-12-16T08:47:00.001-05:002009-12-16T08:49:35.128-05:00Remembering at ChristmasIt'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. <br />
<br />
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...<br />
<br />
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.<br />
<br />
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.<br />
<div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVUw9NNOS-rsmiXVRhpLUurLXqM1PW6kXmDaNMDhwaVmoQBmi8gtQqJ2fY4yF_73PR7sr30ffWWKUKBAzJ6rbBIFzh4VC50lDZjYGTE9jj1XKRXnB24ktV8mQ93-MOquDqi_I4WW_MY5XT/s1600-h/IMG_0015.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVUw9NNOS-rsmiXVRhpLUurLXqM1PW6kXmDaNMDhwaVmoQBmi8gtQqJ2fY4yF_73PR7sr30ffWWKUKBAzJ6rbBIFzh4VC50lDZjYGTE9jj1XKRXnB24ktV8mQ93-MOquDqi_I4WW_MY5XT/s320/IMG_0015.JPG" /></a><br />
</div><br />
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.Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-2757132068533226683.post-81047405222349356862009-12-01T06:41:00.000-05:002009-12-01T06:41:28.469-05:00ScabsI 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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?<br />
<br />
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.<br />
<br />
I keep picking at that scab. It will definitely leave a scar.Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-2757132068533226683.post-54996415894555507782009-10-30T10:43:00.000-04:002009-10-30T10:43:54.616-04:00The Stuff of DreamsI 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-2757132068533226683.post-36410844759199469942009-10-15T07:43:00.003-04:002009-10-15T08:22:24.680-04:00...but Henry died.<span style="font-family: arial;">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.<br /><br />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...<br /></span><ul style="font-family: arial;"><li>"time to shower...but Henry died"</li><li>"time to get up...but Henry died"</li><li>"isn't this a nice day?...but Henry died"</li><li>"I'm so glad that Anna and Sophie are doing well in school...but Henry died."</li></ul><span style="font-family: arial;">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.</span><br /><br /><span style="font-family: arial;">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?</span><br /><br /><span style="font-family: arial;">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.</span><br /><br /><span style="font-family: arial;">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. </span><br /><br /><span style="font-family: arial;">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. <br /><br /></span>Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-2757132068533226683.post-62404368900210464502009-10-09T07:49:00.004-04:002009-10-09T08:07:49.437-04:00SteadyI 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.<br /><br />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.<br /><br />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.<br /><br />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.Unknownnoreply@blogger.com7tag:blogger.com,1999:blog-2757132068533226683.post-26828803138662135382009-09-16T22:00:00.000-04:002009-09-16T22:00:00.564-04:00CollectionsGrief is an exacting lender.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />Our time away came at high interest and now the collection is painful. <br /><br />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.Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-2757132068533226683.post-90912550286074664182009-08-15T16:26:00.000-04:002009-08-15T16:26:00.339-04:00Assessing the DamageI'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.<br /><br />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.<br /><br />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.<br /><br />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.Unknownnoreply@blogger.com11tag:blogger.com,1999:blog-2757132068533226683.post-57726378981428660852009-07-23T09:47:00.005-04:002009-07-23T10:34:53.703-04:00Stages of GriefWe'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'.<br /><br />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. <br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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. <br /><br />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.<br /><br />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. <br /><br />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.<br /><br />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. <br /><br />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? <br /><br />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.<br /><br />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.Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-2757132068533226683.post-53271443207519413532009-07-22T08:49:00.006-04:002009-07-22T09:07:56.166-04:00Happy Birthday Henry<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsEZYlr3yFPs4lzE_wToBXzfTS0HkJMAPmeqWyMWFaAXGBsg-ZVCrXGiK2Mr0En077zJohPwnXhL-m8k2uxq0wN-qv2xH0fH7WG5OhnvKigrAhErDNZmTROpbK_YegETO-Q4iZltMpju4a/s1600-h/IMG_4892.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsEZYlr3yFPs4lzE_wToBXzfTS0HkJMAPmeqWyMWFaAXGBsg-ZVCrXGiK2Mr0En077zJohPwnXhL-m8k2uxq0wN-qv2xH0fH7WG5OhnvKigrAhErDNZmTROpbK_YegETO-Q4iZltMpju4a/s320/IMG_4892.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5361269469683420194" /></a><br />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.<br /><br />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. <br /><br />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.<br /><br />So today we'll remember Henry and be happy. <br /><br />Happy Birthday son. We love you.Unknownnoreply@blogger.com18tag:blogger.com,1999:blog-2757132068533226683.post-23074177005566795932009-06-29T07:22:00.004-04:002009-06-29T07:47:25.811-04:00Tightrope WalkingThe 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.<br /><br />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.<br /><br />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.<br /><br /><blockquote><br />I live by the pool,<br />of memories of you.<br />I dangle my feet in,<br />I touch the water with my fingers.<br /><br />When I'm really missing you,<br />I wade into the pool,<br />of memories of you.<br />I've not yet learned to swim here,<br />so I stay close to the edge,<br />but it feels so good to be immersed,<br />just like when you were with me.<br /><br />It's enveloping and I lose myself,<br />swimming in the pool,<br />of memories of you.<br />The cool water soothes my dry skin,<br />parched by time without you.<br />I turn and swirl the water,<br />my arms outstretched,<br />and I smile thinking of you.<br />But I've drifted too far.<br />I cannot yet swim here<br />and I cannot find bottom.<br /><br />I panic and gasp.<br />I'm drowning in the pool,<br />of memories of you.<br />The water is deeper than I thought,<br />murky and dark.<br />I cannot breathe, my chest heaves.<br />The world is spinning and<br />I'm being drawn down.<br /><br />Maybe I should close my eyes,<br />and lose myself in the pool,<br />of memories of you.<br />Relax and let it take me.<br /><br />I find myself lying in the grass,<br />near the pool<br />of memories of you.<br />I'm drenched and exhausted.<br />But strangely relieved,<br />to have survived my swim.<br /><br />I carry in my being,<br />the pool,<br />of memories of you.<br /></blockquote>Unknownnoreply@blogger.com12tag:blogger.com,1999:blog-2757132068533226683.post-78047712264542645412009-06-21T10:04:00.003-04:002009-06-21T10:28:41.261-04:00Happy Father's DayI'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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />Happy Father's Day.Unknownnoreply@blogger.com14tag:blogger.com,1999:blog-2757132068533226683.post-50078910182470877892009-06-12T14:06:00.003-04:002009-06-12T14:22:28.184-04:00Remembering<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbYB-iwzkLiXylXCAjO4J2xVjBbYtmdpBaeKs9hlrtZtPIj-qKaDd7QCl9UNUFv5OWJWEsiqIyh2Sgyao9XHxqhEVVXW14yMMOdVm38ZlBO_KZLgOxn5zC95hq2RTr9YsjlbYxMR49c05_/s1600-h/IMG_7776.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbYB-iwzkLiXylXCAjO4J2xVjBbYtmdpBaeKs9hlrtZtPIj-qKaDd7QCl9UNUFv5OWJWEsiqIyh2Sgyao9XHxqhEVVXW14yMMOdVm38ZlBO_KZLgOxn5zC95hq2RTr9YsjlbYxMR49c05_/s400/IMG_7776.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5346507331077447890" /></a><br />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.<br /><br />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.<br /><br />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.<br /><br />That's kinda how I feel.Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-2757132068533226683.post-32593937237568451042009-06-09T10:12:00.006-04:002009-06-09T20:43:43.952-04:00Abundant CharityWe'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. <br /><br />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.<br /><br />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 <a href="http://alsf.helphenry.info">Henry's Lemonade Stand Site</a>.<br /><br />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.<br /><br />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.<br /><ul><br /><li>Cranberry Twp, PA - This coming Saturday, for those living in Pittsburgh or nearby, hosted by the children of a former coworker. <a href="http://www.alexslemonade.org/stands/8218">Click here for more information or to donate.</a></li><br /><li>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.</li><br /><li>Ongoing T-Shirt Sales - at <a href="http://www.CafePress.com/LifeIsFragile">www.CafePress.com/LifeIsFragile</a> <br />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:<br /><img src="http://logo.cafepress.com/6/16683360.6746966.jpg" /></li><br /></ul><br />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.Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-2757132068533226683.post-91217952923428641862009-06-05T08:46:00.005-04:002009-06-05T08:59:21.201-04:00What I Miss MostWhat 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. <br /><br />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'.<br /><br />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.<br /><br />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.Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-2757132068533226683.post-13796072982215017022009-05-26T09:17:00.004-04:002009-05-26T10:07:06.284-04:00HealingWe 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. <br /><br />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. <br /><br />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.<br /><br />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.<br /><br />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.Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-2757132068533226683.post-59288486137810930372009-05-22T08:12:00.003-04:002009-05-22T08:44:16.427-04:00ConfusionThe 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.<br /><br />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.<br /><br />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.<br /><br />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. <br /><br />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.<br /><br />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.Unknownnoreply@blogger.com4