Tonight's picture was taken in April of 2006, on Mattie's fourth birthday party. This was Mattie's first birthday party that we held for him outside of our home. We held it at the Riverbend Nature Center. Mattie loved nature and that seemed like the perfect setting to host a party. Mattie and a few of his friends went for a nature walk, got to check out reptiles (a favorite of Mattie's), and did a pretend dinosaur bone dig. The kids had a great time and just enjoyed time running around and playing with each other. A day to remember! Who knew there wouldn't be more days like this!?
Quote of the day: We shall draw from the heart of suffering itself the means of inspiration and survival. ~ Winston Churchill
Today is April 2, two days before Mattie's birthday. The day I actually went into labor back in 2002. In many ways, I consider the whole first week of April, Mattie's birthday week, which maybe why Peter and I brace ourselves for the entire week. I will tell you about our day later, which was geared toward trying to relax, but before sharing these details, I have more important information to share.
I learned that Mattie's close friend, Jocelyn, died today. Mattie met Jocelyn while battling cancer at Georgetown. Jocelyn was older (she was a young adult) than Mattie, but she too had Osteosarcoma. Somehow the age difference did not seem to trouble Mattie in the least. Jocelyn worked wonders with Mattie. Jocelyn had been battling cancer much longer than Mattie and therefore by the time she met Mattie, she already had her leg amputated and went through physical therapy and was walking around beautifully with her prosthetic leg. Jocelyn made osteo, which is an impossible cancer, look manageable. She gave Mattie hope, courage, and really normalized many of his fears. She did not like wearing wigs and hats, neither did Mattie! There were many things they saw eye to eye on! Their candid conversation was refreshing to Mattie and they bonded over thoughts, feelings, art, and zany projects! Jocelyn had a way of helping Mattie out of his shell of depression and her 'can do' spirit was something that gave me hope. I have to admit I worried often about Mattie's future, but then I would look at Jocelyn and think..... maybe Mattie had a chance too! Jocelyn was therapeutic for all of us!!!
I received an email today from Jocelyn's mom asking me to call her. I told her I was away and asked whether it was an emergency or whether we could wait to connect when I returned. I did not know Jocelyn's cancer was terminal, therefore, I did not expect to hear Jocelyn had died. In many ways, Jocelyn protected me from her own diagnosis because I think in her mind, she felt I lost enough already.
When Jocelyn got married, Jocelyn did not have a bridal registry. Instead she asked her guests to make a contribution to Mattie Miracle. She has requested the same type of gifts as remembrances at her funeral. Somehow this generosity and compassion does not surprise me at all. This is who Jocelyn is and will always be. Jocelyn loved Mattie and I know she cared about me and tried to protect me from the ravages of her cancer and her terminal condition. My heart goes out to her mother, because I know all too well the lifetime of grief and agony ahead of this wonderful lady who produced a beautiful daughter.
Jocelyn's mom wrote to me today and reminded me about a dream that Mattie shared with them one day in clinic. Mattie said that in his dream he pictured that there would be a day when he and Jocelyn would not need their bodies anymore. They would be free of pain and could have adventures together. Apparently today is just that day for Jocelyn and part of me thinks that Mattie was there to guide the way for her, two days before his birthday. Another life taken too soon, too young! A great tragedy!!! All the while, cancer organizations are beating the pavement to raise money for biological research! Good luck there! It isn't making a difference! Kids are dying daily, it may not be talked about, it may not be covered on CBS, NBC, ABC, CNN, and the like. But don't let that fool you. It is happening, it is real, and kids are dying. I rather bury my head in the sand too, and if you have a healthy child, consider yourself blessed. But I lost Mattie and I have seen other wonderful young people get taken too soon, like Jocelyn, and it defies understanding and order. Hearing today's news upset my apple cart. Not that my cart was straight to begin with this week. But there are times when I wonder how I haven't cracked up yet. Jocelyn's death has brought me great sadness and as I told her mom today, we are devastated by this loss.
This evening, we went out to dinner, but the news about Jocelyn put me in a terrible mood. After dinner, we came back and walked the beach. While walking by the water, all of a sudden, I felt something sting the heel of my foot. I started screaming. Fortunately I wasn't stung. I just stepped onto some sort of piece of wood floating in the water. But literally I couldn't move or walk. Peter had to run up to the room and get tweezers to pull this wood from my foot. It has been a hard evening for us to say the least.
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