Archive for February, 2010

Saying Grace

Sunday, February 28th, 2010

Prayers at the dinner table will always hold special meaning.  In truth we’ve never been diligent in our prayers.  Scripted words of thanks and blessing never seemed heartfelt.  Instead we left our prayers to our actions and the love we had for our children.  So when we’d say the occasional “grace” around the holidays or on Sundays at Grandpa-Grandpa’s house the girls would never know how to act.  Grace always thought we were talking about her when we’d ask who wanted to say “grace” while Elena waited for her opportunity to fold her hands and be the leader.  Soon the anticipation was too great.  Elena had her turn.


The room was silent (or as quiet as it gets with 20 loud relatives) as Elena began.  “I pledge allegiance, to the flag, of the United States of America….”  No one said a word.  Aunts flinched, Grandmas nodded while Brooke and I couldn’t help but laugh.  At the time, no one thought it was funny except us.  It seems that with all of her practicing to say the pledge of allegiance at school in the morning, this was the only prayer that she knew.  At least it contained “one nation under God”.  Maybe that was our best chance at a prayer.


I think about this now as we sit down at the dinner table at home.  God is on our minds with the Lenten season in full swing.  And while we still don’t fold our hands in prayer as much as should, the fish brings back memories of the seat left vacant by her death.  Grace and Mom always ate meat on Fridays, unfazed by my Catholic presence, while Elena happily joined me with a plate of fish and plenty of tartar sauce.  She too hated fish, but would never leave me eating alone.  That was just Elena.

First Memories

Sunday, February 21st, 2010

It’s when we first remember. The earliest memory, impressionable experience, the start of awareness. And for Gracie it started at age four.

“When I was four we went to Disneyworld”, her friend tells her as they swap favorite first memories at the YMCA Princess Club. “When I was four we moved to our new home”, another girl volunteers. “When I was four my sister died”, Gracie says as she shares her four-year-old experience. Silence. No one speaks. Even for seven-year-olds it is clearly something to consider, ponder and shy from. Many of them too knew Elena, but only to Gracie is it a first memory.

I wonder if it will always be like this. I fear it will. For Gracie, it’s just life. There’s no apprehension and no fear. It’s simply something that just happened and no doubt it will be something that will punctuate her life.

When Elena was diagnosed I feared that Gracie would never know her sister. That the cancer would dominate her memories, the victim of other people’s stories and the charity she now grows up within. It was why I wrote the first passage and why we continue still to this day. Written for Gracie, I wanted nothing more than to pass on the lessons and innocence she shared as sisters with Elena. But most of all, in the barrage of interviews, fundraisers and advocacy, I wanted the memories I captured in her journal to be her own. Today 272 pages of her journal are public but another 300 or more pages still remain her own and will always be hers alone.

As I hear her tonight share her first four-year-old memory, I fight the urge to intervene. I want nothing more than to change the subject, ask about Disneyworld or even distract with an offer of ice cream at the local store. I want her not to be the subject of attention, the one passed over and avoided. Still, I realize that these are her friends, her memories and her conversation. I cannot be there and I certainly cannot hide the fact that Elena is not there to join her in talking about Disneyworld or the new home.

The silence continues. One girl plays with the tassel on her coat zipper; the other looks away. “But Elena always read to me. She really liked reading. That’s why I like reading too”, Gracie finally added. And as soon as it started, it ended with all three girls exchanging stories of their own favorite books and their favorite stories about Elena. There wasn’t any sadness, no fear and no hesitation. It just happened three years ago and today these memories were shared among friends.

Gracie remembers more than I could ever imagine. Even today she tells me things about her sister that I never knew. And together we keep Elena’s memory alive and close to our hearts.

Movie Night

Sunday, February 14th, 2010

Gracie’s one of those girls. Yes, that person in the back row with a comment for every scene, every line and a whisper to punctuate every suspenseful pause. It’s not even much of a whisper – more of a muted yell, cupped by a hand that tells you it’s a private conversation between you and her. Of course the people in front of us disagree. And even I can’t stop her.

Normally I’d worry about the popcorn and candy we smuggled past the 15-year-old clerk at the front counter. I tucked the taffy in my sleeve while Brooke hid the pop in her purse. Gracie claimed the popcorn, proudly puffing up the front of her coat as she folded her arms discretely. But he didn’t care. He was too busy with teenage angst to worry about the profits on the theater’s $9 bag of popcorn and a keg of pop. Yet, Gracie’s whisper prevailed – not two steps beyond the counter. “Geez Dad, I really kept that popcorn hidden, didn’t I?” she asked. I looked back, expecting the theater police and wondering who I was going to call for bail. He looked on. Maybe this has happened before.

Minutes later we were seated and the movie began. Still the whisper continued. I motioned to her to keep quiet. “What if I whisper?” she asked. It was hardly a whisper. “Oh, I like this film, Dad. You can tell by the music that something’s going to happen,” she explained. Even the man in front of us looked back. Apparently this was news to him as well. Even he knew she was one of those girls. I smiled and gestured to her to stop talking. Satisfied, he looked forward. But it was not the last. The characters in the film entered an abandoned building, ultimately suggesting that their best solution was to divide to investigate. “Oh, that’s never a good idea,” Gracie commented. “Why does everyone think that breaking up is a good idea? Of course the monster will get them that way. They really should stay together.” Ultimately she was right. The monster found each character, one-by-one. “You see, I told them. That never works,” she said, shaking her head in disgust with her hands in the air. The man looked back again while I smiled uncomfortably.

It was a long movie. Yet the best performance that night wasn’t on the screen, but instead in the seat right next to me. From title to ending credits, Gracie was the director, at times shifting between instructions for the characters to commentary for us. And by the second monster scene even the couple in front of us smiled when she gestured to the screen and asked “Aren’t they even listening to me!”

I couldn’t begin to tell you what the movie was about. There were monsters, heroes and heroines. There was even a plot – something about saving the world – but that’s how about every movie works. Yet it was Gracie’s performance that stole the show. And I wouldn’t want it any other way. The monsters were defeated, the world was saved and the hero and heroine kissed – to which both Gracie and I responded with “Yheeeewww”.

Movie night. I guess now even I’m one of those people.

Before The Snow Melts

Saturday, February 6th, 2010

We lack urgency. All adults do. But with it we gain appreciation and value to our lives. For if we do not crave every waking moment, our lives become just one moment shorter. What should happen today we push off until tomorrow, until tomorrow is too late.

Three years ago we tried to squeeze every minute out of every day. Having just returned home from St. Jude, we knew that Elena had but months to live. The doctors called it a “honeymoon” and just as all honeymoons must end, we knew that we may never be so lucky as to believe that ours would continue. We woke up at 5 am, eager for the sunrise, and went to bed with the morning’s greeting. And each day busier than the previous, planned to the minute so that one day might account for two. It was the best months of our lives, while also being the worst.

Today that urgency is all but gone. We wake leisurely and for the first time go to bed before midnight. We do what we want to instead of what we must to capture every chance that may be lost. And I hate it. In three years we’ve lost the urgency. In three years we’ve become normal. In three years we’ve forgotten. When you live like you’ve lost it all, you never want to have it all again. Money loses its value next to the only commodity you can’t get enough of: time. And I fear we have lost our way.

It snowed for the first time in a month last night. Truthfully, it wasn’t even much of a snow – more like sleet, rain, sleet, snow and then rain once again. Still, to me it was different. It was about capturing the moment. And instead of dreading the loss of business it would create, the traffic problems we would endure or even the slush that soaked through my boots, I welcomed the moment. Brooke saw the look in my eyes as I watched the weather. I was looking for an excuse and she knew better than to stand in my way. I wanted to take Gracie sledding – no matter how cold and how wet. But even more, I wanted to create a memory.

Without even a question, Brooke went along with Gracie and I as we arranged a trip to the local ski resort for extreme sledding as the rain-sleet-snow continued. Even friends joined in on our adventure, unsure themselves if it was a good idea.

In the end, it wasn’t my best idea. More soaked than cold we climbed into my car at the end of the night and drove through blizzard-like conditions only to thankfully end our journey in our driveway rather than in a snowdrift on the side of the highway. Still, if given the moment, I’d have it no other way. For more than about sledding, the trip was about capturing the moment. It was about having urgency and it was about living. I have no doubt memories were made. And somehow I imagine that Brooke’s memories are slightly more negative than mine, but in the end I want nothing more than to live like Elena taught us to: with compassion, with love and with urgency.