Tonight's picture was taken in December of 2003. As you can see Mattie was in the tub FULLY clothed. That may look odd, but Mattie loved playing in the tub this way. I am not sure if he liked the cold feeling of the tub on his body or simply being confined to this little play space. Either case, he would always venture to the tub. He would drag all sorts of toys into the tub, from rubber lizards and bugs to hotwheel cars! The tub could instantly be transformed from a zoo to a racing track using Mattie's imagination.
Quote of the day: When we come into the present, we begin to feel the life around us again, but we also encounter whatever we have been avoiding. We must have the courage to face whatever is present / our pain, our desires, our grief, our loss, our secret hopes our love / everything that moves us most deeply. ~ Jack Kornfield
I started the day by walking close to four miles in the sunshine. It was nice to be outside considering how horrific the weather was yesterday. I would say the pervasive feeling of sadness is still upon me, but walking and then going to get a manicure and pedicure helped. Tatiana is the lady who does my nails. She does this by day but is studying at Georgetown University to become a physicians assistant. So we compare hospital experiences with each other all the time. Today I told her about Mattie's Foundation, the upcoming Walk, and our Foundation's mission. Typically I do not do this with people I don't know well, but as Peter so aptly stated yesterday, we are becoming salespeople, or perhaps I would say we are evolving into spokespeople for an important cause.
This afternoon, I went to visit Ann's mom, Mary, at her assisted living facility. Mary's roommate died on Saturday, and I wanted to check in with her to see how she was handling this change. Even though Mary's roommate was cognitively impaired, Mary had grown fond of her, and misses her presence now in the room.
I received a beautiful email today from my mom. I included it below because to me the message is very poignant. She talks about death being challenging, but how unexpected and untimely deaths seem much harder to live with and accept. My mom also captures what it is like for her to have to watch Peter and I survive this ordeal. The title of her message to me was "nuclear winter of the heart." To me this was the perfect title and illustration of what has happened to our hearts with Mattie's death. I couldn't have said it better myself, and on days like today where I seem at a loss for what to write, I appreciate my mom stepping in and giving you her perspective.
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Nuclear Winter of the Heart --- By Virginia R. Sardi
Life is a beautiful gift from God, but in the end, all things die and so must each and every one of us. It is a journey to be freely used, a blank screen upon which we can create incredible wonders that inspire or lead lives of self-indulgence and waste. But we learn early on that we are not fully in control of our own destinies or what happens along the way. How we respond to every crisis that arises is what either builds character or destroys it. One of the saddest experiences in life is to see the decline of a loved one, healthy one minute and disabled the next, facing a future of diminished possibilities. Having been a care-giver for several years to my mother who suffered a devastating stroke that left her paralyzed from the neck down except for the use of her right arm, I can remember the passion that went into our efforts to give her a good quality of life with what was left of her body and mind. Despite the trauma to her brain and the disorientation she experienced, my mother did have spirit and remained sharp as a tack until she died. But, she needed an advocate to see that her needs were fully met. Looking back, I would do it all again because it made a difference in how she lived the remaining years of her life. No one could have made her feel that she was still loved and looked out for her best interests than her own family. I overcame the sadness of losing her by acknowledging that the natural order of life is for our parents to die before us rationalizing that it would be far more painful for her if the situation was reversed. Still, there is not a day goes by that I do not miss her and she died seventeen years ago.
Nothing in life, including the loss of my parents, prepared me for the heartbreaking loss of Mattie. Watching the drama of cancer and death invade my daughter’s happy family and suck out the life of my precious six year old was painfully unbearable. Healthy and energetic one minute, then disabled and dying the next! I am stuck somewhere in time not being able to detach the future from the past, blending the two and synthesizing both into a new reality that has made me a different person. Although there is no outward evidence of any physical difference that would reveal the depth of the change, it is still profound. From this new perspective it is easy to empathize with the pain and suffering Vicki and Peter contend with every day when they face a future where they will never see him smile again, never hear his sparkling laugh, never hold his hand and sadly never see the promise of the man he might have become. It is an incomparable heartache for them that make them reluctant survivors of a nuclear winter of the heart!
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