Monday, March 30, 2009

Update: Believe in Tomorrow Port to Fort Race

Tara and I are overwhelmed by the number of people registering for the Believe in Tomorrow's Port to Fort Race in memory of Henry! Thank you all!

When I initially published the information in a prior post, I wasn't very clear on details. I actually did not realize that the P2F registration allowed 'teams'. I kind of thought it would be an informal thing. As it turns out, there are now three "Life is Fragile, Love is Not" teams! :) Additionally for some it seems somewhat unclear how to register and ensure placement on the team.

I've called the Believe in Tomorrow Foundation to see if they can merge the teams to avoid confusion. If you have yet to register, I've included some instructions at the end of the post. While Believe in Tomorrow encourages it, they do not require fund raising.

Finally, with registration you will receive a Port to Fort T-Shirt. Additionally, I've designed a "Life is Fragile, Love is Not" shirt that you can purchase separately if you wish.



Eventually this will be used for fund raising as well, but at this time these shirts are being sold at cost. If you want to purchase one of these, please go to:

We look forward to seeing you all down in Baltimore at the Museum of Industry on Race Day!

Registration Instructions:

If you've already registered and are not on our team - no worries. I think its mostly a convenience and show of solidarity. If you'd like to fix it though - please call 410-744-1032 and ask to speak to someone about the Port to Fort race.

1. Go to the registration site:
2. Click 'Register Online'
3. Click on the link in the middle that says - "Join a Team"
4. Select the Port to Fort event.
5. Continue to follow the registration instructions. There will be a page that asks whether you are on a corporate or community team. Select 'Yes' but omit the team name and captain.
6. As you continue you will eventually be presented with a page from which to enter a team name. Instead of entering the team name, pick "Show all teams." (a small link under the search box.)
7. Select "Life is Fragile, Love is Not" In Memory of Henry Keating Scheck. This is the team with the most members of the three Life is Fragile teams and the one to which I asked them to consolidate.
8. Complete your registration information.

Friday, March 27, 2009

I Smile When I Drink My Coffee

Each morning when I make coffee now, I smile. I commonly choose a 'Diego' cup that he was given at Christmas last year. There were a pair of them and they came with hot chocolate.

Daily, before making my coffee, I would ask him if I could use his 'Diego' cup. After giving me permission, he would say, very consistently, "You know. I have two of those." He would raise his eyebrows and tilt his head like it was the very first time he was telling a stranger about his special mugs.

There was a time I forgot to ask him. He politely corrected me, saying "You really should ask before you use it. But it's OK."

Sometimes I'm overwhelmed by the need to see him, hold him, talk with him, explain things to him, love him, put him to bed...I miss him. But it's OK, because when I drink my coffee I can smile, remembering him.

Sunday, March 22, 2009

Believe in Tomorrow: Port to Fort Race for Childhood Cancer Awareness

Please join Team "Life is Fragile, Love is Not"

Register for the Believe in Tomorrow Port to Fort 6K run/walk for Childhood Cancer Awareness in Memory of Henry K. Scheck

Sunday April 26, 2009 @ 9:00am

Baltimore Museum of Industry, 1415 Key Highway
Runners and walkers of all ages are welcome. Fees include a commemorative t-shirt to the first 1,200 registered runners, a race goodie bag and a post-race party with music, food and beverages.

All race proceeds benefit the programs of the Believe In Tomorrow Children's Foundation.

* $20 for the general public
* $10 for students, active military, Home Depot employees, and Believe In Tomorrow families
* ALL registrations are $25 on the day of the event


Saturday, March 21, 2009

Hide and Seek

I remember when we were in the hospital with Henry, he so loved to hide. We'd leave momentarily for a bathroom break, for morning coffee or to get him a toy and he would insist before we left that we cover him up entirely with his blankets. When we'd return, we'd have to play the game. "Oh, my! Where did Henry go? I left him right here and now I just don't know where he could be!" And then he'd throw his blankets down and yell "Boo!" and we'd play scared like it was the most frightening thing, staggering and holding our hand on our heart, eyebrows up in surprise. He thought that was just about the funniest thing ever.

At home also there were several times that he would hide, and hide so well, that I really couldn't find him. He understood that when you're hiding you couldn't make any noise and we'd pretended not to know where he was for so long that it was like crying wolf when we really were looking for him.

It didn't take long to hit the minor panic mode. I knew he was probably fine, but where the heck was he? This was perhaps the first time he'd discovered the place under our guest room bed. It became his favorite hiding place and while he got that he had to be quiet when hiding, he didn't understand that finding new places to hide was also important, making later games a little less stressful for me. In fact, he liked this spot so well, that once I found little bits of a snack he'd left there, presumably from just hanging out some time before.

Laying on the couch the other day, I was drifting in and out of sleep. I found myself in that semi-conscious state before really waking up and I was reviewing key points in his life; his diagnosis, his relapse, treatment. I recognized this jumping around to various key points in his life as a searching. I could see my brain trying to figure out if there was some clue we missed, some turn we didn't take, some subtlety we didn't catch - seeking for these as if he would suddenly turn up like in a game of hide and seek. There must be someplace we haven't thought to look yet. My brain was still trying to keep track of all three of my children and trying in a sort of panicked way to locate him. Once I really woke up this was recognized for what it was, but how I wished it were true.

I wish I could just walk over and find him hiding under the bed.

Tuesday, March 17, 2009

Henry's Ashes

I went to pick up Henry's ashes today. I didn't expect difficulty. I've gotten fairly good at disengaging my immediate emotions and focusing on the tactical business at hand.

It threw me off however, as the box was placed in a bag and handed to me - that I couldn't carry it by the handles. It seemed somehow disrespectful Or pedestrian. Too ordinary. This was not a bag from Target. And then the slip began.

I lifted the bag to carry in the crook of my arm and felt the weight. I realized that I was carrying my son's a box, in a bag. But the weight. The weight of carrying something that was once him quickly overwhelmed me. I sat for a while in the car to recover before heading home.

Once there I took them upstairs. Tara and I decided to keep them in his room for now as we haven't yet settled on what to do with them.

I realize this isn't the easiest thing to read - or to think about. But it's what we're dealing with. I've hesitated writing for sometime now for that. Sometimes it's just too painful, too private. But there are many reasons for this blog and sometimes I just find it helpful for me to write.

Friday, March 13, 2009


The days immediately following Henry's death were mostly a blur. We busied ourselves with plans and preparation. While we could have found someone to do this for us, we felt it important to give ourselves over to creating something for Henry - something particular, something special, something uniquely him. This kept us occupied, physically, emotionally and psychologically. It was healthy for us.

We noticed a tangible release and exhalation after Henry left. Cancer was gone from our family once again. We were sad that it took Henry, but relieved to be free of the disease that affected us all so thoroughly. These feelings have been difficult to reconcile - the lightness that comes with completing our journey with cancer and the sadness that accompanies the departure of our son and brother. Fortunately for our grieving, we can now rest secure in the knowledge we did everything possible. There are no regrets, there are no what-ifs, there is no anger. We're sad, we're scarred, but we still can love.

The day prior and that of the service were filled with emotion. Our family and friends came in droves and provided such complete comfort for us, our girls and our families. We were especially blessed with a new Scheck born to my brother's family on the same day as Henry's passing and we were honored to have her with us - so new and special. Her presence, innocence and purity reminds us that life continues. And it's beautiful.

As family and friends departed the fullness of our loss began to settle on us. We try to accept grief's presence and function, just as we grew to accept Henry's cancer. Sometimes it freezes us, sometimes it seems like it will never leave and sometimes its' absence is disturbing. Sometimes it comes without warning and sometimes it slowly creeps up on us and overtakes us. At times it is impossible to look at pictures of him. Other times I look and smile and am content. During it all we try to remember that each day will be different and that these are episodes that will come and go like waves.

Tuesday, March 10, 2009

Henry's Celebration Service

There are some from out of town that couldn't attend Henry's Celebration Service and I thought I'd portray as much of it here as possible. There are links highlighted in the order of service, below, for much of the content - including his slideshow. If you have photos that we could also enjoy please mail them to us at

We felt strongly that we should celebrate rather than mourn Henry. He had a wonderful life filled with family and love from caregivers to grandparents, to close personal friends to, of course, us his immediate family. Although his life seemed difficult to an outsider, because this was what Henry knew, he became accustomed to it. This doesn't mean he enjoyed being sedated daily or having a tube out of his chest. It did mean however that these were passing inconveniences that didn't carry with them the expectations of 'normal' that most of us harbor.

He benefited from adult interaction in his ability to express himself. He enjoyed painting and reading. He never learned to write his name, but his vocabulary was incredible. Henry enjoyed games and cars and trucks. He loved to watch Oswald and Curious George. His favorite outdoor activity was driving his 'Truckie', mostly to the bus stop to get his sisters. He looked back on his time in the hospital fondly because of the efforts to comfort him, but mostly because he was loved. He was loved by his nurses, he was loved by his family and visitors and everyone that tended to him. We played with him, we talked to him, we read with him, we cared for him, we entertained him. Henry got to do so many things that were such fun for him.

I don't mean to gloss over the fact that Henry had cancer. This disease relegated Henry's lifespan to just 1679 days. We know it's not normal. We know it is not what any parent would wish for. But that was our Henry. We tried to love him all up in that short amount of time. So what better way to honor and memorialize him than to celebrate him. He was wonderful, he was beautiful, he taught us to love our lives with all we've got. He was our son, our brother, our grandson, our nephew, our friend - our hero. And now, he's our inspiration. Our inspiration to get up each morning and live and love and learn because he cannot.

So this was our tribute to him.

Memorial Service
Tuesday March 3, 2009
(program outside - program inside - photos)


Sonnet 43, Elizabeth Barrett Browning

Prayer of Faith

Remarks, Beth Johns

Litany of Thanks

Reflections from Family and Friends

Remembering Henry's Life in Pictures

Closing Words

Balloon Release


Cortland Mansion
19411 Cortland Drive
Hagerstown, MD 21742
Chaplain Beth Johns, Washington County Hospice

Sunday, March 8, 2009

A Life Remembered

My parents left this morning. The house is quiet and its just the four of us now. I didn't know what to expect to feel. I'm grateful to them for being here for us. Their leaving metaphorically ties up the last loose end before we must 'move on' and its hard.

I've noticed gray days are more difficult than sunny ones; quiet times more than busy ones. Sometimes, just as with his disease, things are matter of fact. He died, we've done what everything we could for him and to bring out of it the best things that we could discover in it. Other times we just miss him so.

This is not why I sat down to post. I sat down to let you know of an article in our local paper that was run today regarding Henry called, "A Life Remembered". Here is the link: A Life Remembered, Henry Keating Scheck

Thursday, March 5, 2009

Henry's Gift

I could never have anticipated the feelings that we experienced at Henry's memorial service. We were pleased that the space was filled with sunlight. We were happy to have Henry's presence through his memories and his special things. As people began to come - some strangers, some old friends, some new friends and our families from all across the country - we cried at our loss and laughed about our love and times with him. Our family felt hundreds strong that day.

We're so grateful to all of you who attended Henry's service, either actually or in spirit. We know of some, despite their best intentions and efforts, could not be there. We have poured over the notes and memories and loving tributes of support that were written to us through the mail or on the message cards from his service. They are touching and heartfelt and will serve as a tremendous memorial of Henry for us. We continue to receive them by email and in cards and we plan to preserve each one. I do have a favor to ask of anyone who took pictures - we'd sincerely appreciate any photos of the ceremony and especially any, any, any pictures you may have of Henry.

Henry's memory has been honored too by many donations to Cure Search, Believe in Tomorrow, Alex's Lemonade Stand and St. Baldrick's among others. We're very touched by the outpouring of generosity and love given to others in his name. Every cent brings us that much closer to additional comfort for families and to a potential cure for many childhood cancers.

As for Tara, me and our girls - we've been shown love and support beyond our wildest expectations. While we are still healing from our losses we feel comforted by the memory of our smiling, brave, four-year-old hero. Our hearts will be forever tender from seeing his picture, or walking by his room, from seeing a toy of his, or remembering how he acted or spoke. But we are slowly and gradually finding balance in the knowledge of his effect on not only our lives but so many we've heard from. It is difficult not to have joy in that. It is in that spirit that I'll be renaming Henry's Challenge to Henry's Gift.

I love you son. You did so well. And I'm forever proud of you.