Thursday, March 4, 2010Tonight's picture was taken in May of 2007. Here you see Super Mattie helping me with the laundry. In our complex, the laundry facilities are on a different floor. Mattie helped me with laundry from the moment he was born. It became an adventure in a way, and his transportation to the laundry room changed as he aged. Initially he may have gone down to do laundry room in a baby carrier (which he HATED!) or his stroller, and as he got older, he would bicycle to the room with me while I would be following behind with the laundry cart. He was my laundry buddy and he never complained about having to tag along with me. Laundry now of course is a much more solemn and quiet experience for me.
Poem of the day: Reality by Lana Golembeski
Reality hits hard and has no remorse
It hits you in your gut
And you feel pain you never thought you could handle
It overwhelms you and knocks you off of your feet
You ask "Why?"
Even though you know there are no answers.
Reality kicks you when you are down
You keep hoping that things really are not what they are
And then you realize…yet again. The truth of what happened
There is no escape
There is no place to hide
Reality finds you in the hidden recesses of your heart
It has no hesitations
It spares you no pain
It hits you hard
In your gut
It makes you realize you have lost everything that ever mattered to you
And yet, again, you ask "why?"
There are no answers.
Reality rears its ugly head
And it spits at you
It laughs at you
It squeezes your heart
It forces tears from your eyes
And it never ends
It fights Hope
Head on
It twists Hope's arm
Reality does not want Hope to win
They are at constant odds with each other
Hope fights to win
But Hope has eternity on her side
Hope is stronger than reality
In the end, Hope will be the victor
Faith accompanies Hope. And arms Hope
With the power to win.
Where is my Hope?
I search endlessly
Only to find empty arms and an empty heart
But I know in my heart
That Hope will always stand by my side
And will be the victor!
The reality of losing Mattie, as the poem expresses, "finds you in the hidden recesses of your heart, it has no hesitations, it spares you no pain, it hits you hard. Reality doesn't want hope to win." Hope is a word that I wore around my neck, thanks to Alison's necklace, for over a year. Hope is a crucial factor in our lives, in fact, without hope it becomes very hard to live, or even want to live. Under the worst of circumstances with Mattie's cancer, when things looked absolutely grim, we clung to the hope that the cancer was going to be caught, removed, and treated. We had to think this way, otherwise it would have been impossible to make it through three major surgeries and a year's worth of very powerful chemotherapy treatments. Not to mention intense physical therapy and experimental treatments along the way. With that said however, when Mattie died, our flame of hope also died. Peter and I battle each day with the memories of Mattie's cancer, with what we witnessed and survived, and naturally our future without our child. Everything we came to understand about life no longer has meaning or makes sense. So the question becomes how do you regain hope? Is such a thing possible? It is in theory, but definitely a much harder concept to embrace from our perspective.
Yesterday I had the pleasure of having a very thorough physical exam, and in the process my doctor had me get a tetanus shot. Since I was a child, I have always disliked tetanus shots because they make me physically sick. I always get a fever and I always have significant arm pain at the injection sight. She assured me I would have no reaction! She was wrong. I had a raging 101 fever today and felt very sore from this vaccine.
I spent part of the day helping Ann pack up her mother's things at Sunrise (the assisted living facility Mary has lived in for two years now). Mary is moving to a family run assisted living facility which has fewer residents and more individualized care and attention. Mary transitions to this new place tomorrow. Packing up Mary's things is not an easy task, because it means one has to comb through her belongings and sort out things that really should be packed and those things that need to be donated. As we were going through some of Ann's dad's clothing, I found it fascinating to see what he kept in the pockets of his jackets. He carried with him meaningful things, like his granddaughter's first communion church program, or remembrance cards of his son who died of cancer. In a way, searching through someone's pockets reveals a lot about them, and in Sully's (Ann's dad) case it was clear that family was very important to him. His pockets were reflective of his life, which I fortunately had the pleasure of getting to know him the year before he died. As I was sifting through things in Mary's room, I could only imagine how Ann was dealing with all of this, and typically I would just ask Ann, but I wasn't 100% today, and I also admit I did not want to go there. Maybe I did not want to hear her answer! Mainly because I can only imagine myself going through Mattie's things, a job I perceive as overwhelming, that I still refuse to do this, that on some level I instinctually know how Ann must be feeling. I think also being allowed to go through someone's possessions is an honor. I am very attached to things, because things remind me of people, of our times together, and things help to create memories. Going through Mary's room and helping Ann in this way was for me significant. Experiencing these hard moments in life further connects us as friends, and clearly experiencing the death of Mattie and Sully has been life altering for Ann and I, but with that said today, I felt our friendship deepen because I was entrusted with Mary's possessions.
Dr. Aziza Shad, the director of the Georgetown Hospital Pediatric Oncology program, and a Mattie Miracle Cancer Foundation board member, invited Peter and I to a book signing at the Hospital tonight. I was under the weather so unfortunately could not attend, but I am so happy Peter did. He met some wonderful families, two of whom also started a foundation in the memory of their child. One of the Foundation's is entitled, Hope for Henry. This foundation gave Mattie many, many gifts while he was a patient at Georgetown, and the executive director of the foundation is Henry's mom, Laurie Strongin. Laurie wrote a book, "Saving Henry, A Mother's Journey." Peter bought the book and spoke to Laurie as she was signing it. Laurie encouraged us to network with her and Peter had the opportunity to personally thank her for all the gifts her Foundation offered to Mattie. Peter told me about all the staff in attendance at the event. I learned that Jenny, one of Mattie's art therapists, is leaving Georgetown tomorrow. She is moving to Oregon with her family. She will be missed tremendously, and I can't imagine the clinic without her presence. I learned of another family who we loved, whose daughter is back in the hospital because her cancer has returned. I was SO upset to hear this. This family was very supportive of us while we were at Georgetown, and I distinctly remember this young girl's dad hugging me during very bad moments and also telling me what a great job I was doing. These are moments I will never forget because I really needed the support.
The Mattie Miracle Cancer Foundation donated a printer to the childlife playroom in the fall. We put a label on the printer about the Foundation, and the label also has a picture of Mattie on it. Apparently I heard tonight that the printer was a very appreciated addition to the room, which has two computers, but no printer. This made me very happy to hear that something we provided is making parents' lives 1/16th better! Nonetheless, as Peter was talking about Georgetown this evening and its staff, I brought me to tears. I miss this community greatly, because they supported me through various moments of hell. Georgetown is a very emotionally laden place for me, and just thinking about the nurses and other support staff there stops me in my tracks, and moves me to tears. This should tell you a lot about the importance of these people in my life.
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "As you said, these life decisions are very difficult; thank goodness Mary has Ann to help her and guide her in this process. Even now, I would be reluctant to make such a decision on my own. And I know that Ann is grateful for your help with this whole process as well. I know that you are struggling; grief is a very poor companion, ever present but definitely not what you would choose if the choice were yours to make. We would all love to change the situation for you and Peter if we could; turn back the clock and unmake what has happened but since no one can do that, allow us all to support you as we can. There is a synergy in companionship that is more than just what each person brings; let that energy help carry you through the times when faith is hard to find. I feel this myself as I practice with others versus alone; sometimes the energy carries me to places I could not reach on my own. I hold you gently in my heart and send my positive energy your way today."
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