Sunday, April 25, 2010Tonight's picture was taken in February of 2009. As you can see, Mattie was shoving a cupcake into his mouth. In order to motivate Mattie to do physical therapy, we made a deal. For every good session he had, in which he worked hard and tried to do what Anna asked of him, he would get rewarded with a cupcake. So clearly as the picture illustrates, Mattie had a good session that day! During February and March of 2009, when we were between hospital visits, I would bake about two dozen cupcakes at home and bring them with me on each hospital admission. I kept up my end of the baking bargain, and Mattie tried not to disappoint either!
When You feel Lonely
When a person you love passes away
Look to the night sky on a clear day.
The star that, to you, appears to be bright,
Will be your loved one,
Looking upon you during the night.
The lights of heaven are what shows through
As your loved one watches all that you do.
When you feel lonely for the one that you love,
Look to the Heavens in the night sky above.
As many of my readers know, Saturday was a particularly challenging day. I decided to go to bed at 8:30pm. Which is very unlike me. I had trouble falling asleep and because it was so early, I periodically woke up from sleep. I was trained in the PICU to sleep with my Blackberry right next to me, this habit unfortunately hasn't faded away. If you want to see me fall apart quickly, take my Blackberry away from me for a day. I could analyze this I am sure, but I am very aware of the fact that my Blackberry represented connections to the outside world while I was in the hospital, it also represented where I would get a large percentage of my social support. The significance or the need for this connection and support hasn't changed this year. I may not be living in the hospital, but instead I am dealing with the aftermath of PICU life and cancer, and naturally grief.
Case in point, last night as I was having trouble sleeping, I was e-mailing back and forth my lifetime friend, Karen. I gave her a litany of all the things that were bothering me, some of which I do not mention on the blog. Since Mattie's illness, Karen and I start our day and end our days together through e-mails. She may not live in Washington, DC but I have a pretty good idea what her days look like even though she is in New York City. This is the beauty of technology, which I am very grateful for. In the midst of having trouble sleeping last night, I also received three very supportive emails from friends. They may not realize it, but Junko, Denise, and Tanja's e-mails came to me at the right time last night. At a time when it was important to hear from others that they simply understood why Saturday was so hard for me, and that despite the pain, they are here, still listening, and continuing to walk the journey with me. Never underestimate the power of reaching out to someone, because I can attest to the fact that it made a big difference to me. Tanja was at the Communion party with me, and she acknowledged in her e-mail that she could tell that things weren't right with me, just by observation. She was most definitely correct.
Yesterday was a day filled with crying. When I got home from the Communion party, I felt very edgy and as Peter held me, I continued crying. I felt like it was a scene from Alice in Wonderland, where Alice cried so many tears, she created a flood. Today however, was a different kind of day. It was a productive day. Peter and I never left our home, but we got several important tasks done for the Walk. Some times staying busy and focused on a goal can be a good distraction. Especially when the distraction pertains to helping to make the Walk a successful event.
I would like to end tonight's posting with three messages. The first message is from my friend, Charlie. Charlie wrote, "I'm sorry that Saturday was such a tough day for you. It makes perfect sense that seeing what Mattie will never get to experience would bring new grief to you. Unfortunately, that is how life is when you have suffered the death of a child; your own life is filled with moments and events that will never be experienced by your son. While we often are in a position to mourn the death of parents or grandparents and we wish they were there for events, it doesn't come with the same force as that of the missing child. I hope that as time goes on you can stand back a little further from the ocean of grief and have it be a little less overwhelming for you. I do hope that today is better, that the road turns upward for a while at least and that you have a sense of peace for a while. As I practice today, I will send my energy to you to help you remain upright in the swirling waters of mourning. I hold you gently in my thoughts."
The second message is from my friend and colleague. Denise wrote, "It seems so unfair that sometimes in order to stay connected to Mattie, you experience so much pain through remembering so many beautiful moments with Mattie and grieving the loss of all the moments that you will not share. I wish that I, and I know my wish would be echoed by so many others, could somehow magically lift the burden and pain from your heart and carry it for awhile so that you could experience the joy of those moments without the sorrow. The miracle of Mattie is that he touched so many lives and all those he touched are here for you and Peter as you struggle with this incredibly devastating loss. I was listening to some music yesterday, during a quiet time, and the music reminded me of sitting in the sun. And I thought of Mattie and the story of the creation of his beautiful painting and his dance as he painted it in all those beautiful colors. Mattie left his footprint on so many hearts and all of those hearts hold you all within them. I wish you peace in your heart."
The third message is from a friend and colleague. Sara wrote, "I hope you are finding some peace and solace today--or maybe just some numbness--which you so aptly stated is often easier than feeling. I'm sorry yesterday was hard for you, but completely understand this. The centerpiece you made is absolutely gorgeous. It astounds me that even in your immense grief you have the capability to not only create, but to create beautiful things. This speaks to the spirit that is still inside of you despite your tremendous loss and grief. You amaze me. I went to a first communion yesterday and also thought of Mattie a lot while I was there. It is hard to watch life continue to go on when you feel so lost in grief, I think. And all the rites of spring just make it that much harder. I just want you to know that I think of Mattie a lot and I still can't believe he isn't here. Rationally I am aware of this but it's like every now and then my emotions are jolted and I think really? Why? Such a beautiful little boy, our world was so much better with him in it. He had such a wonderful smile and I really miss seeing that. Life is just so precious."
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