In light of my current mood, I felt like posting this picture tonight taken in July of 2008. Specifically, Mattie was diagnosed with osteosarcoma on July 23, and two days later it was my birthday. A birthday I will never forget. Though I was smiling in this picture, I was in a total state of shock and fear. As you can see, there were Christmas lights behind us. Mattie loved Christmas lights, and it was a tradition that he and Peter would create a display together, the day after Thanksgiving. Despite the fact that it was July, we all needed something to brighten our mood, and Mattie suggested Christmas lights. So out came all the Christmas boxes, and our deck was transformed. In essence this was the beginning of the change within me. Prior to Mattie's cancer diagnosis, I lived a rather predictable life. Meaning that Christmas lights would only come out in December. But cancer allowed me to think beyond the acceptable parameters of life.
Poem of the day: I Dreamed Last Night of Heaven by Brenda Penepent
I dreamed last night of Heaven
As I followed you there
I felt your presence, heard your heart,
I almost touched your hair.
I remember crying
Just because I missed you so
Though I was right behind you
I didn’t want you to go.
I begged for a reminder
To help me see your face
A thing to hold and touch
But it left an empty place.
I looked for you in everything
I asked for you by name
I know that you were with me there
I’ll never be the same.
I dreamed last night of Heaven
I ache for one more glimpse
Of the love I felt while near you
And the beautiful heart I miss.
Tonight's picture brings back the memories I have of Mattie being diagnosed with cancer. It was a time when our world seemed to be falling apart all around us. At the time I had no idea how we were going to get through this, much less help a six year old cope with such devastating news. In my wildest imagination, I had no idea that a year later, Mattie would die. It is a thought that no parent wants to think about, or can think about when battling cancer ferociously with chemotherapy and surgeries.
I recall on May 23, 2010, at the Mattie Miracle Cancer Foundation Walk, Sean Swarner said that cancer was one of the best things that ever happened to him. That comment has stuck with me, and has plagued me. Sean is a resilient young man who has overcome tremendous obstacles and escaped death twice, so I have no doubt in that context cancer has profoundly altered his life. It most likely gave him the passion, courage, and determination to accomplish all the things that he has and will continue to do. However, do I agree with his comment? Well the answer is perhaps! Naturally as a mother who lost her only son to cancer, I most definitely can not say that cancer was the best thing that happened to me. On the contrary it is the worst and most horrific thing that has happened to me. Cancer robbed me of the chance to raise Mattie, to watch him grow, and to nurture and guide him into the future. It has shattered my hopes for the future I thought I would have, and it has deprived me of the chance to experience the special kind of bond and love Mattie and I shared together. But what else has cancer taught me?! Cancer has been a wake up call in so many ways. Once you have experienced a life and death situation, it is impossible for this not to change your mind and your heart. I have seen that life is fragile, that bad things can really happen to good and innocent people (even children!), and that nothing is guaranteed in life. Cancer has caused me to re-evaluate everything in life, my priorities, my career choices, and my future. In the midst of all this trauma and tragedy, Peter and I have also seen amazing acts of kindness, love, generosity, and compassion. If it weren't for Mattie's cancer, I would never have met the extraordinary people at Georgetown University Hospital, I may not have seen Mattie's two school communities unite forces to create a very tight and amazing network of support, and I may not have slowed down enough to truly appreciate the wonderful friends I have around me (friends who would volunteer hours upon hours of their time to make sure this year's walk was successful). So though I wouldn't say cancer was the best thing that happened to me, I would say that cancer enabled me to see the realities of life much clearer and to appreciate the connections to people that Mattie built for me.
I wanted to share some more Walk pictures with you tonight. These pictures illustrate the posters that surrounded the Foundation table at the Walk. It took me weeks to comb through the internet to find these facts and to put them together in a coherent and logical manner. I was pleased with the outcome, but naturally perplexed and outraged by what the facts revealed. In essence, I think you will agree after reading these posters that MUCH more needs to be done to fund pediatric cancer research and MUCH more needs to be done to psychosocially help children and their families through the cancer journey.
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "What wonderful pictures on the blog, starting with Mattie in the PICU. The nurses and the staff never had a clue what kind of a whirlwind was about to descend on them. And he was a whirlwind, sending out love, hope and joy; sometimes frustration and anger but always with the heart and mind of a creative seven year old. Those are great pictures from the walk as well; it is clear that tremendous planning went into every bit of it. This walk was like planning for a huge family event, it takes all your time and energy, is wonderful while it is happening and then a day or two after, you find yourself asking "is that it?" The letdown you feel is compounded by the grief you are already carrying and completely to be expected. Be gentle with yourself and find a way to do something just for you (massage, spa, or whatever) in the next day or two. As you find your way back onto the path forward I send you the energy of my practice to guide your steps. I hold you gently in my thoughts."
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