Tonight's picture was taken at Mattie's third birthday party. He had a Blue's Clues party. Mattie was in love with the TV show Blue's Clues, and we created all sorts of games around this theme. Birthday parties were not always easy for Mattie. Mainly because there was usually a lot of noise and chaos around him. However, over time, each successive party got easier and easier for him. I will never forget this party, mainly because this was the last one we planned for him at home.
Poem of the day: Memories by Lana Golembeski
All that remains are the memories
Of your laugh, your smile, and you.
Faded photographs remind me of happier times
I look at your pictures
I touch your face
Your hair
But it isn’t you.
Those are just pictures that bring back the
Memories
I can see your love of life
Your love of friends
Your love of living
In each picture of your life.
But those pictures end
Too soon for someone like you.
I long to touch your beautiful hair
To hear your wonderful laugh
To give you a big hug
To hear your stories of your life.
I want to take you shopping once again
And to lavish you with silly
and wonderful things.
I have no one to spoil anymore;
No one to call me “mom;”
No one to tell me that they love me.
And I long to hold you once again and
To whisper in your ears how much I love you…until the end of time.
As promised, The Mattie Miracle Cancer Foundation is proud to announce our speaker at this year's walk will be Sean Swarner. I had the opportunity to be introduced to Sean electronically last year. Thanks to a SSSAS parent who was a part of Team Mattie, and a parent of a classmate of Mattie's. Sean and I traded e-mails last year, because I was inspired by his story, his will and hope to survive cancer, and his mission to help others fight this horrible disease. Some quick facts about Sean. He is a:
1) Two-time pediatric cancer survivor
2) First Cancer Survivor to climb the 7-Summits
3) Author of the book Keep Climbing
4) International Motivational Speaker
Here is a snipet from Sean's website: "Sean Swarner has broken through defined human limitation in order to redefine the way the world views success. Sean was diagnosed with two completely different types of cancer, once at the age of 13 and again at the age of 16 where he was given fourteen days to live and read his last rights. He astounded the medical community when he survived both these brutal diseases and a medical-induced coma. Sean realized that after defeating cancer twice, no challenge would ever be too great or any peak too high."
I encourage you to watch the two youtube videos about Sean's life and to visit his websites. Sean embodies everything I was looking for in a speaker for our first MMCF walk. Sean understands cancer, has lived it, has an incredible message of hope and survival, and has turned what could have been a tragedy into something positive, uplifting, and inspirational. I very much value his commitment and passion to help, educate, and support others, and it is our hope that you will support this year's walk and come meet Sean and support a valuable cause (which is to ultimately raise money for pediatric cancer research and be able to offer social support services to children with cancer and their families).
Videos on Sean:
www.youtube.com/watch?v=dTGi1MhxtEM
www.youtube.com/watch?v=lVQGAg-k4bw
Websites: http://www.seanswarner.com/ & http://www.cancerclimber.org/
As the poem indicates tonight, Peter and I are left with many memories. That is all we have to pull from. Imagine, those of you who are parents, that the only reminder of your child you have is a memory? You can no longer hug your child, say you love him/her, and certainly you can't purchase anything for him/her any longer. This is quite hard for me, I have been conditioned to shop for Mattie. I knew what would make him happy and what he needed. Without this role, I feel lost. It leaves me with an emptiness that is indescribable. I miss Mattie's voice and hearing him say, "I love you." We always said to each other, "I love you to the moon and back." How do you come to peace with not having your child in your life? I really don't know, you have to accept it some how, but finding peace over losing Mattie seem unobtainable.
I met with Ann and Alison for lunch today. Meeting with this dynamic duo always reminds me of our Mattie planning days. Typically if they were both visiting me at the hospital at the same time, then things weren't going well and there was most likely a crisis. It seemed as if our lives were always in crisis. You don't forget individuals like this who always seemed to rise to the occasion, even when things seemed the worst. As Mary (Ann's mom) always says to me, she and I are united over the deaths we experienced, Ann, Alison, and I were united through cancer.
This afternoon, Ann's youngest daughter, Abigail, and I went back to the tree. I swear this tree is a powerful force. While climbing the tree, Abigail did some gymnastic routines and she had me evaluate each routine. However, Abigail then asked me to make up another story for her while she was climbing. She specifically asked for a dog story. So I did not disappoint. I created the story of a big dog named, "Big Red." Okay not a very original name, but Big Red went with his family on a Caribbean cruise. Abigail was also in my story. She was Captain Abigail, the coordinator of the children's programs on the ship. This story took on a life of its own, and in the process of telling the story, Abigail joined in and literally we incorporated her spring break vacation activities into the story. Abigail reminds me of Mattie in many ways, because this is something Mattie would have done. Mattie loved creating, and he loved spending one on one time with me. Talking, creating, and just being. Not all children can appreciate that, but as I was sitting with Abigail today, it reminded me that... yes indeed I was once a mom.
Tonight, Peter and I had dinner at Ann's house and then we had our first Walk planning meeting. Ann's dining room table was surrounded by volunteers. Many of whom helped with the walk last year. The ideas were flowing and the energy to do and participate was strong. The meeting left me very humbled. Humbled because Mattie's life touched these individuals in such a significant way that they would generously come back this year and give of their time, skills, and energy. As the meeting ended, I felt so many emotions. The feeling that Mattie's life mattered, that he brought parts of his communities together, so much so, that they are committed and behind us to plan another walk! But also I couldn't help but feel sadness. Sadness for why we were at this meeting. Once people were leaving, I began to cry. Tanja was sitting next to me, and she literally put her arm around me for about 15 minutes as I was just unable to talk. In these moments there is nothing you can say to me to make me feel better, I really have to sit in my emotions, and somehow Tanja understood that. She was quiet, yet very supportive. I felt understood and not alone. I felt like I received a gift tonight being in the presence of those who care so much.
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "It is impossible to believe that Mattie is not here to celebrate his 8th birthday. Like everyone else I cannot help but believe that there is a reason that Mattie's birthday falls this year on Easter Sunday and within Passover week. As we attended Seder last night with our community the Rabbi told us to search our lives for something that we needed to work at freeing ourselves from whether it was overwork or an addiction or anything that prevented us from taking joy and appreciating the life that the Lord has given us. I thought about you and how hard you work to keep from being held prisoner and succumbing to overwhelming grief. I know it takes courage to awaken and face each day and so as I practiced today I sent my energy to you to help you find that source of strength within yourself. I know that the march will be a good if bittersweet event but I hope it helps bring some peace and healing to your heart when you see all those who care about you joining with you in remembrance and support. I am glad you had an opportunity to get out and enjoy an evening with Peter, Jerry and Nancy and that you were able to find a space for laughter. I hold you gently in my thoughts."
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