Friday, December 31, 2010

Friday, December 31, 2010

Tonight's picture was taken in December of 2002, Mattie was 8 months old. I remember Peter taking this picture, and you may think that Mattie and I just paused in front of the tree and smiled for the camera. But it wasn't that simple. Basically to get Mattie to smile, I had to run around our living room with him in my arms bouncing him around. He found the whole motion of running and bouncing hysterical. So by the time I stopped in front of the tree, he was already laughing, and Peter snapped the picture you see here! With Mattie there was ALWAYS a story behind the picture.

Quote of the day: You may forget with whom you laughed, but you will never forget with whom you wept. ~ Carie O'Leary

I woke up at 3am to a chirping sound. The battery in one of the smoke detectors was running low, but I was in such a deep sleep that when I awoke, I was disoriented. I couldn't place the sound at first but then I figured it out. My intention was to solve the problem without awaking my parents. But what unfolded for the next 30 minutes could have been straight out of an episode of I Love Lucy. The only problem was I was Lucy and Ethel wrapped up in one. Since I did not know where my parents kept a ladder, I had to get creative in climbing my way up to reach the ceiling. I first tried a chair. Forget it. I still wasn't tall enough. Then I started piling pillows on top of the chair, and climbed up on the pillows, performing a balancing act while reaching the ceiling. Despite even my best attempt, I couldn't reach the ceiling. Then I thought I should just let the thing chirp all night and go back to bed. However, that thought only lasted about a minute in my head, until I decided on plan B. Plan B involved climbing on a chair, and then climbing onto a piece of furniture that I carried over to where the smoke detector was. It may not seem too funny to you as you are reading this, but I assure you between the strategy I used to reach the smoke detector and the fact that I was talking to myself out loud in the middle of the night, I was most definitely a sight. I am happy to report that I successful dismantled this detector and eventually got back to sleep.

This morning Peter told me that a purple balloon found its way onto our deck. Not only onto the deck, but right next to Speedy Red (Mattie's ride-on car). Peter was captivated by this balloon, because where we live we RARELY see balloons. Mattie loved balloons, and to some extent we both couldn't help but think that Mattie was sending us a sign. Amazing the signs and messages you read into when you have lost someone so important to you. I told Peter that I actually saw this same balloon two weeks ago, before I left for LA. It caught my attention, just like it caught Peter's. However, when I saw it, it was outside our deck. It was actually in the plantings area, where Peter and Mattie used to set up their Christmas light display year after year. When I saw this purple balloon, I immediately thought of Mattie. So this balloon has traveled to two key Mattie locations, and how this balloon found its way onto our deck and not a neighbor's deck is curious. Peter and I would both prefer Mattie's preference and I find it a sad commentary that we desperately cling to this balloon as a physical symbol of him.

I had the opportunity to go out to lunch today with my dad's colleague and friend, John. I have known John since I was in high school. Over lunch we were all talking about some of the health issues we experienced, some of the medical issues that are currently be addressed, as well as the memories of watching a parent die. As lunch was coming to a close, John said to me that I must have found this lunch conversation very depressing, since this is NOT what "young" people talk about. With that I corrected him. I told him that I maybe much younger than those sitting at the table, but what I don't have in years, I have more than made up for through Mattie's cancer. I explained that I have most likely seen more of hospitals, pain, and debilitating illness than all of them combined. With that John seemed happy that I brought up the topic. He said that he was afraid to talk about Mattie and my loss, but since I spoke about it, he was going to. He told me that he was an avid blog reader when Mattie was alive, and that he honestly does not know how we survived that battle. In addition, he wanted me to know that Mattie couldn't of had better parents, advocates, and caregivers. As he continued talking, we all landed up in tears at the table. What caught my attention was despite the fact that I was on the East Coast and John was on the West Coast, he emotionally absorbed what Peter and I faced and continue to face over Mattie. So just when I think others can't possibly understand, I have a reality check that assures me others are out there, listening, and feeling for our loss.

This evening, I received an e-mail from Karen (Keaton's mom). Karen sent me a posting from a mom whose child has cancer. This mom SO eloquently explained why saying good-bye to 2010 is so complex for those of us who lost a child. As promised I was going to write about this myself tonight, but thanks to Karen, I can instead post the feelings of another mom. The beauty of you reading this is you can see that SO many of us feel this way. It is not just Vicki and Peter. Instead, it is the reality of all of us touched by pediatric cancer. Yes we say good-bye to 2010, but in essence we must face being further separated from the time Mattie was on this earth. We instead are forced into another year without him. As the years pass, the feelings do not get better, they remain unchanged. Or perhaps the feelings become more pronounced and intense. We know that two classrooms of children are diagnosed A DAY with cancer, and that close to 200 cases of Osteosarcoma are diagnosed in a year (*Note: Mattie had multifocal osteosarcoma, a form of osteosarcoma that is MORE rare and much harder to treat). So we can safely say that no new children will be diagnosed with cancer in 2010, but with 2011, the counter starts back at zero, and the idea that other families and children will have to face what we did in 2008, becomes overwhelming, humbling, and it does make me feel a sense of powerlessness in this world. I have posted below this other mom's comments, which I think are worth reading.

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The last day of 2010

2010. You've been a hard, hard year.

There are people in the world suffering under political regimes I cannot grasp, homeless, destitute, in slavery, in the depths of the human condition, starving for things I take for granted like food, shelter, warmth, love, kindness. I acknowledge that, I know I have a life of advantage and have and will receive a bounty of blessings.

I can recognize that and still call you hard 2010, because this year, this year I was witness to suffering that should not happen, suffering that has set up camp in my heart and refuses to leave, suffering that is not my own.

For too many families 2010 is a year that will be seared not only into their memories, but into their souls. It is the year their child died from cancer. I know two of these moms, personally. They aren't some caring page I follow from afar, they are women I know. Women I've hugged. Women whose children's voices I can still remember, whose smiles linger in my memory and refuse to diminish. I can see them like it was yesterday, because in 2010 I did.

In 2010 I stood in quiet attendance as their coffins were buried. It's been 4 months since August, since their battles ended and they found relief from their tremendous physical suffering. Tomorrow will mark month five for one of those families. That date is what brings me here.

I sat thinking before Christmas, that in so many ways I am ready to leave 2010 and it's hardships behind, to move on to a fresh new year. I am sure many of you have the same feelings, or at the least are excited to start a new year and see what surprises it holds. Are those two women? Because I can't shake this one simple thought in my brain.

January 1, 2011 will be the first day of a calendar year they live without their child.

As awful and horrendous as 2010 has been to them, this day December 31, 2010, they can still say, "this year, 2010, I held my child. I hugged and kissed my child and told my child they were loved beyond measure. This year 2010, my family was whole. In 2010 my child was here." A simple tick of the clock, a ball dropping in a busy city, it takes that away from them. From here on out they live in years without their child. Years where their child is memory. Their child will have been here last year.

I think of them both and wonder if their hearts want to linger here in 2010. If December 31st could last a few weeks or months until they are ready to face what happens at midnight. It's not just another day, it's a new beginning and one that is mixed with longing to linger here and hope for healing there.

A part of me wants to stay in 2010, because on December 31, 2010 all 400 of the kids who will be diagnosed with my son's cancer have heard their diagnosis. In those brief waning hours of new years eve, no more children will be diagnosed with his cancer this year. I want to stay here in this moment, where membership is temporarily closed to new members. With 2011 the counter resets and 400 more families will join the ranks of the Wilms Warriors.

In 2011, over 13,000 more children will be diagnosed with cancer in the United States. In 2011, almost every day of it, 47 children under the age of 15 will be diagnosed with cancer. Some of those days it will be less than 47, but too many days it will be more. 1,400 of those newly diagnosed children will die within this year. Countless little warriors who have already been fighting the arduous fight for years already will die this year. All of those families will find themselves in this place with my friends come December 31, 2011. Facing the dawn of a new year in which their child will not live.

All of this will pass and my wanting to stay here in 2010 won't stop that from happening.

Tomorrow will be about hope, it has to be, it will be.

But for today, in these final hours of 2010 I want to hold on to the year 2010, because in 2010, Skye and Sam lived.

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This evening, my parents and I had a New Year's Eve dinner together. It was a peaceful and tasty evening, and we naturally toasted to Mattie. To all my readers, we wish you only the best in 2011. I would like to end tonight's posting with a message from Mattie's social worker, Denise. Denise has been a steadfast supporter of us through Mattie's death, I value her messages that she periodically sends me.  Denise wrote, "Just want to take a moment to wish you many blessings in the New Year. I know the past several years have been difficult ones and I don't know that it ever gets any easier. I just trust that there will be moments along the way where you can find some peace, some joy, some hope. I have great admiration and affection for you, because in the midst of your own heartache and pain, I see you constantly giving of yourselves to others. In the midst of your giving remember to stop and take care of you. Just want you to know that you continue to be in my heart and my prayers."