Sunday, November 8, 2009Tonight's picture was taken by my mom a week before Mattie died. She sent it to me yesterday, and we both commented how good Mattie looked despite his need for oxygen and a pain pump at home. It is hard to believe that this smiling face is no longer with us, and on nights like tonight, I just sit back and ask myself how could this be possible? What cruel trick of nature could allow this to happen?
Poem of the day: I Loved You So by Diana Whitton
I think of you and start to cry,
It breaks my heart that you had to die.
Your final days were filled with pain,
But never once did you complain.
I miss you so with all my heart,
But I know we'll never be apart.
I'll always have memories of you and me,
With lots of pictures of you to see.
Your Angel came down and took you away,
Even though our family wanted you to stay.
Your pain is gone...it is no more,
It's time to spread your wings to soar.
I know it was your time to go,
But, always remember...I loved you so.
This afternoon Peter and I headed to Georgetown University Hospital to attend their annual remembrance memorial for all the children who died at the Hospital. On some level I knew this was going to be a hard visit, since this was our first visit back there since Mattie's death. I will acknowledge that I may be different from most parents. Why? Because I have a strong affection and admiration for the doctors, nurses, and support staff at Georgetown, and because of this, visiting the Hospital is almost like visiting something very familiar, something very secure and comforting. I assure you this is an odd statement for me to write as it is for me to admit, since prior to Mattie's illness, I despised hospitals. They made me nervous and edgy.
When we walked into the Hospital chapel we were greeted by Linda (Mattie's childlife specialist), Jenny and Jessie (Mattie's art therapists), Denise (Mattie's social worker), Sharon (the chaplain), and Gail (our patient advocate, who heard my share of complaints!). It was at that moment, the feelings of the past 13 months started to hit me, but I was still okay at that point. However, as the ceremony got underway in the chapel, all sorts of feelings came over me. My heart began to race and I had trouble catching my breath, which is the first sign for me, that crying is about to happen. Sharon, the chaplain, did a beautiful job with the ceremony, and said many meaningful things. Such as, no one can understand the true depths and grief of losing a child, not even your spouse. She went on to say that spouses deal with grief differently, and therefore can't support each other most times through this crisis because both individuals are too absorbed in the hurt and pain. I have been saying this for 13+ months now, so it was nice to hear that actually verbalized by someone in public today. The death of a child is a crisis in a marriage unlike no other. In fact, I picked up a book today that I believe Karen K. gave me, entitled, "When the bough breaks." I have been opposed to reading grief books for various reasons. But something about this book caught my attention today, maybe because I was feeling vulnerable about going to the service this afternoon. The book devotes a whole chapter to the impact of a child's death on a marriage, and the first line in the chapter is that 70% of couples divorce after a child dies. The author goes on to dispel this statistic, but none the less this myth has been promulgated in our society.
At the service, Peter and I got to light a candle for Mattie and we also had the opportunity to say a few words. During the ceremony, I could see that we were surrounded by several of our nurses, doctors, and support team. So it was a combination of feelings, that came over me today. I was far more emotional than I was at Mattie's funeral, and several things I think explain this. First, as time is passing, I am allowing my defenses to slowly wear away so that I can actually deal with Mattie's loss on some level. Second, being at Georgetown brought back some very raw memories of Mattie which flashed before me, and third, I felt surrounded by people who understood me and knew the true depths of what we suffered this year. Therefore, I cried throughout the service and felt like the experience was very meaningful to me today. Ann, came to support us through the service and sat with us, and passed us tissues at several points.
Once the service was over, Jane, Norma, and Tricia came up to us and visited with us. These were all nurses of Mattie's. Jane was a PICU nurse who provided excellent care to Mattie after his limb salvaging surgeries, Norma is a sedation nurse who played a crucial role in sedating Mattie for all his cyberknife procedures (and she and her daughter supplied me with wonderful chocolate treats during some hard PICU days), and Tricia, who is one of Mattie's favorite HEM/ONC nurses. Tricia was one of the first nurses I connected with in the PICU. Tricia and I just understood each other, and respected each other right from the beginning. Tricia helped me through times that seemed inhumane, and also fiercely advocated for Mattie and us when we needed a helping hand. I will always remember the first week Mattie received chemotherapy. He was mad, upset, and lashed out at me. He was screaming at me and told me he hated me. Tricia was in the room with us while this was happening, and she tried to calm Mattie down, but I was very upset and was crying as well. She literally took both of us by the hand, helped us into Mattie's bed, and tucked us in together. It was that tender gesture that won my heart from that point on, because she understood how devastating it was for a mother to have to watch her child receive chemotherapy and then to also hear how much her son hated her for doing this to him.
I realized something very powerful today, that I hadn't been able to verbalize before. It is that I truly understand the power of loving people, especially people who I am not even related to. This may not seem like a revelation to some of my readers (that it is possible to love someone deeply who you are not related to), but to me it is. I like a lot of people and respect them, but I have always reserved love to just my family members. This year, my heart has been opened up in ways that is simply unimaginable. It is ironic in losing Mattie, one of the greatest and most powerful forces in my life, that through this deep pain and suffering, I am able to experience love on a much deeper level. I attribute this gift to Mattie, since he connected me to several precious people in my life. In fact, on some level I feel as if he wouldn't leave me, until he felt confident to know that I was surrounded by this type of love in my life.
After the chapel ceremony, there was a reception outside the Lombardi Clinic for family members. Peter was walking with Tricia and Jane, and I was following behind him with Ann. As I was walking with Ann, I realized just where I was. I was walking down the main hallway of the hospital, the hallway which Mattie and I traversed during each hospital admission or visit to the Lombardi Clinic. In addition, in the hallway there is a magnet shape painted on the wall just over the hallway's threshold. I must admit my ignorance, because during the first several visits, I couldn't figure out what this painting was supposed to be until Mattie told me it was a magnet. In any case, as I walking with Ann today, I felt as if I was part of an Alfred Hitchcock movie. The hallway seemed to be getting longer and longer, and in the midst of this transformation, I was carried back in time to pushing Mattie in a wheelchair through this hallway, with him talking to me, about a host of things, and then of course stopping me periodically to make sure I recognized the magnet painting. It became almost impossible to walk this hallway today, and if Ann did not have her arm around me, walking beside me and talking to me, I would have most likely not made it. Ann remained calm, told me I could turn around if I wanted to, that I did not have to walk the hallway, and then she recalled and retoll a story about Mattie in the hallway that distracted me for a brief moment, so that I could focus upon it. None the less, I was crying and everything about Mattie, his illness, and his death seemed to flood me in that hallway. It was in this moment, that time seemed to stop. That I couldn't believe Mattie was no longer with me, and yet at the same time I felt his presence in the hallway. As if he were walking besides me.
When we finally got to the atrium where the reception was, I went to sit down, and Tricia and Ann brought me things to eat and drink. Tricia sat with me for quite some time, and I cried and laughed, as if I was visiting with a friend I have known for years. Thank you Tricia for being there today, as I told you, it wouldn't have been the same without you there or at the funeral.
There were only three families present today who lost a child to cancer. The other families lost a child either within the transplant unit or through intensive care. I had the opportunity to connect with Cody's parents today. Many of you may recall that Cody (who had neuroblastoma), age 7, died in March of 2009. While I was talking to Cody's mom, I could immediately sense that she and I were on the same plane as it related to grief. Similar to how I felt when I e-mailed Chris (Sammie's mom) this week. I began to make the connection that we are all turning away from other people, shutting out the world, and trying to find meaning in our lives, now that the one true meaning for a mom has been taken away from us. I have been hesitant to join a support group, and Cody's mom expressed the same concern. I am not saying I will never do this, I just don't want to do it now. Grief is a very personal thing, and there is no right or wrong way to process it or handle it. Sharing grief with a group of strangers right now is not top on my list. I have talked with Georgetown's social workers about establishing a group for some of us at the Hospital, but the problem is most parents do not want to return to the Hospital for such support. I personally would welcome it, because this is where my daily support network has been for the last year. So I left today with the feeling that I am not alone, other moms who lost a child to cancer feel the same way as I do, and trying to seek support, when I don't feel like attending such an outlet or deem it necessary at the moment is okay.
Later on today, I went to visit Tanja and her daughter, Katharina. Katharina wanted me to stop by because she made something for Peter and I. Katharina made us a batch of delicious brownies which was a treat in and of itself, but in addition to this gift, she handed me a handcrafted card. The card had some beautiful flowers, fire works, and balloons on it that she drew, and on the inside, she wrote that she will never forget Mattie and wanted to do something to acknowledge him and his Foundation. She has been saving her allowance to give us a generous donation. At first I did not know what to say to Katharina. This was a gesture that was deeply meaningful, and for a child to save her allowance for such a cause, made me pause and smile. Mattie obviously touched her life, and in her own way her gesture to save up her money was telling me she wants to help others like Mattie. I told Katharina she is my youngest donor yet, and that this meant a great deal to me. Mattie's legacy ultimately lives on in his friends' memories and lives. Katharina's donation enabled me to see this tonight. We also want to thank Tanja for sending me home with dinner so that I did not have to cook!
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I can tell you from my training and the people I worked with at a grief workshop yesterday that what you are feeling is completely normal. That feeling that there is nothing to look forward to; that life is unfulfilling now is something I heard over and over again. I heard about sadness, anger, guilt, loneliness and isolation. I wish I could tell you that there is a clear, well marked path out of this but there is not. You are two months into grieving now and it is interminable from your side of it; these feelings are awful and all consuming. For right now try to focus on small things and on "today" as much as you can. While meeting a friend for lunch may not qualify as a date on the calendar to look forward to, it is important and helpful to have those plans and not lock yourself away all the time. There is also a difference between public memorial ceremonies and sharing your story with a grief volunteer or counselor; I encourage you to do the latter, I've heard again and again the difference it makes in the long run (a place you cannot see right now). I do hope you find some comfort in the memorial service you are attending today and know I am thinking of you as you do so."
The second message is from one our favorite HEM/ONC nurses, Tricia. Tricia wrote, "I just got home from work and it is after 10 pm. I am off for the next two days and the kids have off of school tomorrow. By the way, I don't know if you saw it or not, but Monday night there was a full moon. I went outside to take Peanut (Tricia's dog) out before bedtime and despite how dark it was, the moon was brightly shining and in that moment I felt happiness because immediately upon seeing it I said to myself "Mattie Moon" and I know he was listening. The following morning at 0630 as I was driving down Maine Avenue into work, again there was the moon as bright as ever in broad daylight beaming down from the sky, I whispered softly to MATTIE that I miss him and love him. As usual he was listening and I felt happy. These spiritual connections are how I find peace and happiness, and are the times I choose to remind myself that Mattie is truly at peace himself now, then I find myself saying a prayer again for you to help you find some form of peace. Anyway, just wanted to share that with you, you know I am thinking of you always."
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