Monday, September 14, 2009This was Mattie's first Christmas picture. It was taken when he was 7 months old. It was the first snow for the season, and literally we dragged Mattie's entertainment saucer outside on the deck to try to capture a picture for our Christmas cards. I remember covering the saucer with a blanket, and dressed him up as Santa's elf. Since he was 7 months old, I assure you getting him to look at the camera and smile was a MAJOR project, but one I will always remember!
Poem of the Day (Thank you Kristi, my Osteo mom friend in Nevada, thank you for falling in love with Mattie):
REMEMBERING A LOST CHILD by Elizabeth Dent
Go ahead and mention my child
The one that died, you know.
Don't worry about hurting me further.
The depth of my pain doesn't show.
Don't worry about making me cry.
I'm already crying inside.
Help me to heal by releasing
The tears that I try to hide.
I'm hurt when you just keep silent
Pretending it doesn't exist.
I'd rather you'd mention my child
Knowing that he has been missed.
You ask me how I'm doing
I say "Pretty Good" or "Fine."
But the healing is something on going
I feel it will take a lifetime.
Today was a day of many revelations! I started out tonight's blog with a poem I received from a fellow osteo mom, who lives in Nevada. Kristi and I have been writing to each other for months, and following our children's progress through our respective blogs. Kristi sent me the above poem a few days ago, and I knew it would strike a chord with me when I was ready. Today was that day. Between this poem and many e-mails I received today, which you will see below, I began to see that I do need the emotional support from others. I do need to hear how you all are feeling and thinking about Mattie's death. In fact, though I am a private person (which certainly you wouldn't think after this year of blogging my heart out!), Mattie's death is NOT a private affair. Mattie affected an entire community. However, I live my life in isolation right now, out of choice, and I am sure when I am ready I will slowly break down the invisible walls of protection and let others back into my life. But at the moment, I feel lost, confused, angry, deep sadness, and at times depressed. These are things I am trying to get a handle on before having open dialogues with others. At the core though, as I said I am a private person, and therefore my intense grieving and crying is just that, it takes place in my own time and space.
I want to share an e-mail that I started my day off with. Dr. Kristen Snyder, Mattie's oncologist, writes me EVERY day since Mattie's death. She is quite aware that Tuesday marks a week that Mattie will be gone from our lives. Here is what Kristen wrote, "Dear Vicki and Peter, I feel like today should be a normal day. I woke up this morning and Mattie crossed my mind...before anything else. And my realization that today is hardly normal for even me. And I can then only imagine how your lives now lack 'normalcy.' As you struggle to come to grips with all that happened, know that we too are trying to come to grips with it as well. I hope you feel our collective strength in this struggle."
Kristen, along with many other e-mails I received today, opened my eyes to the very real fact that others are pained and suffering right along side us. Not that this brings me joy, it certainly doesn't, but I am human, and I feel the great need to know I am NOT alone in my feelings and that perhaps there is a reason Mattie suffered and battled cancer for 13 months (not that any reason in my mind is sufficient). I do not want to think Mattie's life was for naught, and I think I am even more troubled to think that Mattie will be forgotten. So Kristi's poem, Kristen's e-mails, and all the other feedback I received so far today, made me pause. I paused because for once I realized what I needed, what I could ask Team Mattie for right now. I told Ann, it was like an epiphany today. What I need, if you are comfortable to do this, is to share with me your thoughts, feelings, and reactions to Mattie's death. As you will see in one of the e-mails below from Anne (a mom of a friend of Mattie's), she shared her daughter's reaction to Mattie's death. I try to protect the thoughts and feelings of others on this blog, and will only publish something if given permission, especially if the content is personal in nature. I just want to assure our readers that Anne freely shared this touching information about her daughter, Elizabeth. I thank all of you for writing today, and helping me to see that though I live my life in isolation, that doesn't mean that you are not feeling my pain, hearing my heartache, and profoundly changed from Mattie's death. Thank you for opening my eyes to this today!
This morning I began to go through my electronic photo albums. For Mattie's funeral reception, I would like to be able to share photos throughout Mattie's life with you, however, I have HUNDREDS of photos to sift through. This is a HARD task for me. I started opening up the photo files, and got through maybe one month of pictures and I had to shut the computer down. It was too intense for me, and I wasn't able to manage this. So I realize I need to take this picture project in steps. I started looking at baby pictures, and it is impossible to believe that a healthy baby could develop osteosarcoma at age 6 and then die at age 7. Something just doesn't seem right about this!
Peter and I have also been struggling about what to put Mattie's ashes in. We debated about urns, or even something whimsical like putting Mattie's ashes in a Lego creation he made...and the list goes on. However, in the end, I wasn't at peace with ANY of these decisions. Then it hit me today. I want to put Mattie's ashes in a beautiful Italian made music box. As a child I spent many summers visiting relatives in Italy. Italy is known for many things, but one of the things that I most admired in my visits were the beautiful marquetry (in laid woods) music boxes. They are hand crafted, intricate, made from beautiful woods, and play music. As we all know, Mattie was a work of art, created beautiful things, and loved music. I am hoping Mattie would be happy with my choice. Peter knows how I have been agonizing over this, so he was happy I came to peace with something. The irony is I made my decision on the music box and then my mother wrote me an e-mail later in the day suggesting the same thing. Literally my mom and I were on the same wavelength, and we are thousands of miles away from each other. This only solidified in my mind that the music box will be an excellent choice.
We would like to thank the Bugg family for a wonderful and delicious lunch. Thank you Marilyn for the quiche, wonderful fruits, and amazing lemon bars. We also want to thank the Keefe family for a wonderful home cooked dinner. We appreciate your steadfast support and kindness. We appreciate the meals that everyone on Team Mattie provides us, and we are truly grateful for this commitment and level of support you give us.
I would like to share five messages I received today and end the posting with a poem. The first message is from a colleague and friend. Melissa wrote, "It is time for me to at least attempt to convey my deepest sympathy and sorrow for the loss of your dear Mattie. It has been difficult for me to confidently think about or seriously attend to anything else this past week, for you and Peter and Mattie are at the forefront of my mind. My heart aches for your loss. My soul and my mind cry out to God, "Why!?!" I simply cannot comprehend it. Mattie has touched me deeply. I am forever changed because of his spirit, and because of the spirit that you and Peter displayed throughout the torturous battle, and because of the spirit that was displayed by others as they have tried to support and comfort you. It has awakened an awesome and mighty spirit within me as well. It is a spirit that rejoices in the awesomeness of a remarkable love between parent and child. It is a spirit that marvels at the incredible courage you show to face another day and somehow find ways to see beauty in some things amidst your disbelief, anger and despair. It is a spirit that is like a soft wind that constantly whispers to me to enjoy the "Mattie Moments" of my life, live for what is most important, and find a way to do the things that matter most or at least try to live each day being fully present in the moments that matter. A dear childhood friend and classmate of mine, Julie, died when she was 7 years old. Despite my anger, confusion and questions to God, I somehow still believe in and hope for Heaven. And though I have no idea what it is like--I'd like to think that my friend Julie has been part of a 'welcoming committee' for Mattie. I envision her greeting him with her huge smile, her infectious laughter and with an armful of her favorite flowers, blue bells, and then they run off to play, frolic and explore joyously in their now perfect bodies in paradise. Julie died nearly 28 years ago and yet her spirit and memory still live on for me. I am certain that will be the case with Mattie and the children who were blessed to be called his friends. I am eager to join you in some small way via whatever vehicles and means you establish to honor Mattie's memory. Thank you for continuing to so bravely and honestly share with us via the blog. You do not yet even know the awesomeness of the impact that that gift alone will have on others' lives, though I pray that it (and others) will be revealed to you in time."
The second e-mail is from a fellow SSSAS mom, whose daughter was a friend of Mattie's. Anne wrote, "I wanted to write to you to share a few stories. First, the obituary was beautiful. Rich and I both sat at the kitchen table with tears streaming down our faces. I want to relay the story of how Elizabeth is handling the news of Mattie's passing. It has taught me so much about my daughter and speaks volumes of how wonderful Mattie was. Elizabeth has known that Mattie was sick. We have always included Mattie in our grace at dinner, "God, watch over Mattie . . ." But we did not discuss his decline. We opted to wait until after he died to talk to her. I still think this was the right decision for her, but it was hard. On Tuesday, we told her we needed to talk to her and we went up to her bedroom. I told her I need to talk about her friend Mattie. She excitedly said "yes." I explained that he had been very sick, that the doctors did everything that they could and Mattie fought as hard as he could but that he had died. Her face instantly transformed and was the saddest I had ever seen. Her only response was, "he what?" That night she did not speak another word about it. She just sat and thought. We put her to bed and she fell asleep. The next night, I talked to her and asked about Mattie. She got furious. She is furious with the other kids because they are talking about it at school. I asked if they were sad and she got very angry and said no. "They cannot be because they are talking about it." I had to explain that everyone grieves differently and some people find it helpful to talk about it. She does not like that and is fiercely protective of anyone talking about Mattie (I guess I have learned that she likes to bury her head in the sand with emotional problems). Well, at this point, she started to cry and say how much she missed Mattie. Elizabeth has cried before (believe me), but this cry was completely different. This was a cry that rocked her soul. When my mom died, Elizabeth cried, but she was crying because I was sad. These tears were being shed because she was sad. She told me how funny Mattie was, and how she remembered going to see him at the hospital and how he looked just fine then. We talked about Kindergarten, and how she wants me to find pictures of Mattie so she can keep them. She then fell asleep in my arms crying. Then, this weekend, on Saturday she and I went shopping. She insisted we wear our Mattie Walkathon t-shirts, which we did. She asked me to take really good care of my t-shirt because when she out grows hers, she wants mine. She says that she "will always treasure the shirt and her time with Mattie." Finally, we went to church yesterday. Thirteen months ago when we went, Elizabeth told the congregation about Mattie's illness. Yesterday, we needed to update the church. I asked her if she wanted to do it. She said no. So I stood up and spoke. I had rehearsed my speech a thousand times so I could get through it without crying to the point where I could not speak. I did okay, but when I started to falter, Elizabeth grabbed my hand and gave me a huge smile . . . well that made it worse, and I started to cry :) Just as an FYI, here is what I said: "We thank you for your prayers over the past 13 months for Mattie Brown, a 7 year old classmate of Elizabeth's who has been battling cancer. With a heavy heart, we must tell you that Mattie lost his battle this week. We now ask for your prayers for his family, and for his young friends who are dealing with a very difficult life lesson so early in their lives." Vicki, you and Peter are constantly in our thoughts and prayers. Stay as strong as you can and know that there is a Team walking with you ready to help with anything at all that you need."
The third e-mail is from a fellow SSSAS mom and dear friend. Junko wrote, "I read the obituary that you have written for Mattie yesterday.Tad and my mother also read and were heartbroken to see Mattie in there, yet we were also very touched how beautiful it was written. It must have been beyond difficult to do this (along with so many things you have had to do for the last 13 months) and we are truly in awe of your amazing ability to be able to do things so well for Mattie, no matter what they are.My mother cries a lot - she tells me when she picks Kazu up from school, she unconsciously looks for Mattie coming out of school, and realizes that he won't. I also caught myself doing that this morning when I saw the VW car in front of me, and in a split second, I looked for your face in the driver's seat. I am very sad but also angry at the same time why this had to happen to one of the nicest and dearest people I know, and to all of us. I really worry about you and think hard how I can help you and Pete. If you can think of anything, please let me know. I will do it!! I just wanted you to know that. I love you."
The fourth message is from a fellow SSSAS parent and dear friend. Tad wrote, "We all read the obituary yesterday. You are such a wonderful mother, Pete a wonderful father. I have written several over my recent past, and I know the mind cries out against the writing of these things for any family member. Much more evident, however, in looking at that page in the hard copy of the Post, how unjust, unfair, unacceptable the beautiful smiling face of Mattie is juxtaposed among those who have been with their families and loved ones much longer (though understandably also loved and missed). Vicki, I know how it is easier to find solace with those who are also facing hardships, who are very ill, or who have experienced losses. My mind brings me right to someone I knew in school, who was very healthy and had not faced such losses. His response when I told him my father had succumbed to an aneurysm was essentially "sorry to hear that; what are you going to do?" I know now that was more a response arising from a lack of relevant experience (and sensitivity that comes with such experience), than a lack of caring. However, that kind of lack of experience is everywhere, and still stings, or leaves me cold. It is not the kind of experience that we wish on anyone, but it does bring with it more care and concern, more living in the moment, which seem all too lacking everywhere you look or listen nowadays. We are all here, thinking of you always."
The final message is from one of Mattie's outstanding HEM/ONC nurses. Katie was one of the nurses who helped clean Mattie up the day he died. She is an amazing nurse and someone I will greatly miss seeing every day. Katie wrote, "Vicki and Peter,Where to even begin?... First, let me express to you just how sad I am over the loss of Mattie. I hope you all really understand just how great an impact Mattie, and the two of you had on me over the past year. I have been stretched and challenged to the core regarding my nursing practice, professional and personal relationships and spirituality because of your little boy and the advocacy you had regarding his treatment and care. Because of the relationship I formed with Mattie and the two of you, I really questioned what I am doing in this profession and came to the conclusion that there's nothing else I could be doing than pediatric heme/onc and it is the profession to which I have been called. Please know that you, and your precious son helped solidify this knowledge for me.Also, please allow me to thank you particularly for allowing me to be a part of Mattie's final moments and especially for giving me the honor of helping to prepare Mattie, along with Trish and Debbie, after his passing. As strange as it may sound, I can only describe it as a holy experience. Not one I want to do again any time soon, mind you,but one that I felt blessed to be a part of. Mattie was a boy I fell in love with as soon as I met him, (and of course, once he noticed my new red shoes) and I felt blessed to spend every moment with him,especially those final, precious, holy ones. Please know just how much you are loved. I hope to keep in touch with both of you. I leave you with the verse that has continued to be on my heart, Philippians 1:3; "I thank my God every time I remember you."
I end tonight's posting with a beautiful poem written by my friend Charlie.
Warrior by Charlie Brown
How do you picture a warrior?
A soldier, a marine?
A man of Sparta, with spear and shield?
I see a little boy of six
Fighting desperately to overcome
A vicious, unyielding enemy
Mattie, you had help from the best
A mom and dad who would give
Anything to see you well
You fought until it was clear
That this enemy was not to be denied
And then you fought some more
You have a spirit that will transcend
The limits of your body
And mark forever those who knew you.
Rest pain free now and know
That your story is engraved
In the hearts of those who loved you.
1 comment:
You have our tears and our prayers.
an eye opening article for you.
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