Wednesday, September 16, 2009

Wednesday, September 16, 2009

Tonight's picture captures Mattie's first trip to The Outer Banks of North Carolina. Mattie was very intimidated by the ocean at first, however, after exposing him to the beach three summers in a row, he began to love it. In fact, playing in the sand became one of his favorite past times!


Poem of the day (Thanks Kristi!):

THINKING OF HIM by Robert E. Selle

Stepping on Shore
and finding it Heaven!
Of taking hold of a hand,
and finding it God's hand.
Of breathing new air,
and finding it celestial air.
Of feeling invigorated,
and find it Immortality.
Of passing from storm to tempest,
to an unbroken calm.
Of waking up and finding it Home.


Peter and I live quite a life. I go to bed at 3am, and he seems to wake up at 3am. Why, you may ask? Because this was our pattern in the PICU. I watched and played with Mattie until the early hours, and then would be exhausted, and Peter would wake up and take the next shift. Our bodies are just used to this very unhealthy pattern. Peter ran some chores this morning, and I was visited by Blanca. Blanca has helped me clean our home this year because I neither had the time or the desire. Blanca saw Mattie during various stages of his treatment this year. She continued to pray for him throughout. When she saw me this morning, she told me she had something to talk to me about. She learned about Mattie's death through my neighbor and she wanted to tell me how sorry she was that Mattie died. She then gave me a hug, but instead did not let me go. It was interesting, I guess it is what she said, or how she said it, or basically that she hugged me and did not let go, but I landed up crying. I was crying, she was crying, and for that moment in time, I almost felt as if Mattie was with me, right there in the kitchen. As if he was watching this whole scene that was unfolding. In fact, it was almost like a spiritual experience, because I felt as if Mattie for that brief period was trying to communicate to me that he was okay.

Peter and I had a lunch meeting with Ann and Alison to discuss funeral arrangements and plans. As you all know, Ann is our Team Mattie Coordinator and Alison is our Mattie Fund and Communications Coordinator. These women have helped us through 13 very long and painful months, and yet are still there for us. Their efforts are tireless and unrelenting, so much so that they are committed to helping us with the final part of our journey, Mattie's funeral. I can imagine that for Ann and Alison, today's meeting was difficult. After all they united together and created Team Mattie in hopes of returning Mattie to health, and devoted countless hours and most importantly their hearts to this endeavor. So the question is, how does Team Mattie move on to this next phase of helping us? This is a difficult question, but clearly one in which the Team is attacking straight on. Peter and I deeply appreciate the generous help and support being offered to us from both SSSAS and RCC families, and I am truly touched how our communities remain steadfastly behind us. So you maybe asking yourself, how was it to talk about the initial plans for Mattie's funeral? It was very surreal. After all, I do not think any parent should have to lose a child, much less have to think about a funeral, and ways to memorialize a child. There is SO much I want to say at the funeral, and yet at times I am at a loss for words. I have spent an entire year writing each and every night, and though I was going through a different type of hell this year, my writing just flowed. It was easy to report about Mattie, our reactions to his treatment, and our fears of living with cancer. Trying to write about our grief and about our next steps are far more complicated. I think primarily for me it is complicated because I myself am so numb and in shock. I am not in touch with my emotions completely, and therefore being guarded affects my ability to think and process my feelings in a written format.

One conclusion I finally came to peace with tonight is that there is no right or wrong way to grieve. I say this because I have been trying to analyze why I am not in a puddle of tears each day. Since crying is usually something that comes naturally to me. But I have been reflecting on how I have dealt with other losses in the past, for example, the loss of my maternal grandmother for example. I was extremely close to my grandmother, after all she lived with my parents and I since I was a baby and in many ways I always felt like I had two mothers growing up. When I lost my grandmother, upon reflection, I reacted the same way as I am doing now. I did not do much crying, but you know what I did instead? I spent my entire graduate school career researching the topic of strokes and family caregivers, and then wrote my dissertation on this subject matter. For me, grieving means action. I must do something, help someone, be proactive. It is funny how I just came to this revelation tonight, and never thought about it prior to Mattie's death. Though I loved my grandmother dearly, losing Mattie is a very, very deep and profound loss for me. So though I consider myself a very emotional person, during times of great stress and trauma, this side of me goes into hibernation until I am ready to deal with the emotions on my own terms. So in line with my action plan during my grandmother's death, I have an action plan with Mattie's death. I want to create a Foundation as soon as possible, and I want to begin brainstorming ways to help finance Osteosarcoma research and to me most importantly find a way to meet the psychological needs of patients and families with Osteosarcoma. Which I assure you is severely lacking. At times I pause and I wonder if Mattie is looking down at me and wondering why his mother isn't crying? Why I seem, with emphasis on SEEM, to be able to function? But then I pause and I realize my Mooshi Moo knows me better than I know myself, and he knows that I miss him terribly, that each day without him is not the same, and it is my hope that he would be proud of the fact that Peter and I want to help others who are plagued by this horrendous disease.

Peter has been working on developing our Foundation's website. It is already looking great, and I am so thrilled Peter has these technological skills! I have noticed lately that Peter has acquired many new items, such as a new printer with a scanner, and so forth. I am beginning to see that Peter has given Mattie's Foundation a lot of thought and is figuring out ways to get us up and operational from home. The Foundation is most definitely something we both are passionate about, and I can't think of a better way to keep Mattie's memory alive, then by helping other children and families with Osteosarcoma.

We would like to thank the Bartlett family for a very generous dinner. Thank you so much for supporting us throughout this year, your kindness won't be forgotten.

I would like to end tonight's posting with five messages. The first message is from a fellow SSSAS mom and friend. Tanja did share information about her daughter in this posting, and her daughter, Katharina, gave me her blessing to post this message. Tanja wrote, "What I am writing to you today is not meant for you to feel bad about how I or my family feels about Mattie and his death. It is meant to let you know that we are thinking of you and you are not alone in your grief. We all have to go our own path and deal with our own grief- and we will. I feel very blessed to have gotten to know Mattie and you and feel honored to have been able to be part of his and your journey. THANK YOU! Well, if yesterday was an epiphany day for you, today was certainly one for me. I don’t know how you felt today but today has been one of the hardest for me since last week. I woke up this morning and immediately thought of you and Mattie and that it was a week ago today that he died. I have been thinking of Mattie and you all week – just like I had been for the last 13 months. But today was hard – almost harder than when we learned about Mattie’s passing. I was irritable and grumpy all morning and throughout the day. Both, Tyler and Katharina commented how short and rude I was. In truth, I was just covering up the tears I was crying inside. I am a very private person myself and often when I am very upset I will pretend I am fine. Today, I did a horrible job in covering it up. Earlier tonight I was sitting at the computer; tears were running down my face. I should have been fixing dinner, preparing lesson plans and doing all sorts of other things. But nothing seemed important. I just sat in silence and reflected on Mattie and you. I have only known Mattie for a short time of his life, but he certainly got me hooked, too. If I am such a mess, I can’t even imagine how you and others who have known him for longer must feel. I know I will never forget him and always love him; his beautiful smile and most of all his expressions when he was up to something. I also was able to gain a deeper insight into how Katharina has been dealing with her grief. We were at Target today and out of the blue she said (and that is when I almost lost it): “I miss Mattie!” There are so many things here in the store that remind me of what he liked and I would love to buy it for him. Then I realized that he is dead.” That was it. But only for a few hours. We got home and she did her reading but was down and didn’t even want to watch TV (her favorite activity other than sports). She then said she was tired and wanted to snuggle with me. She just did not seem herself and on a hunch I asked her if she was sad that Mattie was dead. She said yes, but she did not want to talk about it because it hurt too much. Thankfully, the silence did not last long. She cried a few tears but than channeled her hurt into an action plan. She thought of many ways on what she could do to prevent other children and their parents to feel the hurt she is feeling again after losing another friend to cancer. One of them was of course (as I mentioned in my previous email) to give you some of the money she has saved up to support research in cures for osteosarcoma. In her words: “I know it won’t be much but at least it is a start. It can’t be soon enough to find a cure for cancer.” She also wants to have a special savings container to save up more money for cancer research. After a few more minutes she all of a sudden thanked me for introducing her to meet Mattie and how glad she was to become his friend; despite the hurt she feels right now. She realized that she did not know him for long but from the beginning she felt that Mattie was like a cousin to her. She also said that she was sad that he died but she is grateful and happy that she got to know him. He was very special to her. At Target she also bought a “Puffle Puff”; some sort of stuffed creature (more a face than anything else). I’ll attach a picture of it. She named it Mattie because its expression and smile reminded her of Mattie. Thanks again for allowing us into your life and be part of your journey. Mattie will NEVER be forgotten. He will continue to make us cry and laugh – often at the same time."

The second message is from a fellow Lombardi Clinic mom. Cathy and her family have been very supportive of us, and we are grateful that we met them. Cathy wrote, "I have taken too long to try and find the right words when there are none. That any child should have to battle this disease is tragic but to have fought so hard and lost is unthinkable. Anyone who met Mattie would agree that he was a special boy; a bright, creative, and loving spirit. It is obvious that his parents had much to do with the creation of that special person. I feel honored to have met your whole family and touched by the caring and courage that you have shown to all. Throughout this whole ordeal you have managed to show your compassion for everyone else by posting information about Mattie’s struggle as well as baring your heart and mind. It takes a lot to endure what you have and still be thoughtful enough to keep those who care updated through every step. I thank you for sharing your journey. You are one of the most thoughtful people I have ever met. You may use my comment however you wish and know that I am truly in awe of your empathy and graciousness. If it is at all possible it makes me cry even more over Mattie's passing because I know how much like you he was. I follow your blog daily and will stay in touch. I wish you peace and long nights of sweet dreams in the future."

The third message is from a young lady we met on the morning of Mattie's sternotomy. Linda (Mattie's childlife specialist) asked Dana to come in to juggle for Mattie right before his surgery. Mattie actually loved watching Dana that morning, and it put him in a good mood. Dana wrote, "I’m Dana, the juggler Linda brought along to help entertain Mattie before his surgery in June. To be honest, I thought about writing you an email several times before, but I never followed through for fear that it would come across as presumptuous or overly forward, especially since I only met Mattie for such a short time. But since you expressed in your blog that you want people to write, I wanted to share with you the lasting impact Mattie has had on me. The morning I came to the hospital to meet Mattie, I left my house stressing over school, exams, and petty problems in my personal life. On the walk over to Georgetown Hospital, I spent my whole time worrying myself sick over the fact that I might not get into a top-ranked law school. But in that short time that I met Mattie, I felt my whole perspective change. I realized that all the problems I build around myself on a daily basis to occupy my time stressing and worrying about nothing are completely self-indulgent. When I walked into that hospital room, I saw a an adorable and brilliant little boy with the whole world ahead of him fighting an illness that no one deserves, but least of all him. And I also saw an amazing family between you, your husband, and Mattie- the kind of family people would give absolutely anything to have in their adult lives- so unfairly forced to deal with the worst case scenario, the worst thing that could happen. And yet I saw that you were all living, loving, smiling, and making the absolute best of the moment. You’re all tough as nails, and there I was having spent my whole morning playing “woe is me” over absolutely nothing. It made me feel provincial and short-sighted. It made me see that I need to change- that I need to appreciate life just for being alive. That I need to appreciate life for what it is and not stress over what it isn’t. That I need to see the privilege associated with having the time to worry about things that don’t matter. That I need to realize the “daily grind” isn’t an excuse to have a pity party, but rather a chance to appreciate the peace of the status quo and the beauty of the moment. Mattie showed me that life is a gift in a way that goes beyond anything anyone could ever tell me. Of course I’ve heard it said so many times, but it takes someone like Mattie to make it real. Mattie has given me a new perspective on my life, and I can’t thank him enough for that. I can promise you that even after meeting him for such a short time, I’ll never forget him and that I’ll take his memory with me as I go through life. You’re in my thoughts. I admire your incredible strength and I thank you so much for sharing Mattie’s story through your blog."

The fourth message is from Mattie's clinic buddy, Jocelyn. Mattie loved Jocelyn, for many reasons. Jocelyn also has Osteosarcoma, and Mattie could really relate to her. Thank you Jocelyn for having the courage to write to me today. Jocelyn wrote, "I have started and stopped this email about a dozen times since last Tuesday. I cannot believe it has been a week in this world that Mattie has been gone. There are no words to encompass the loss you and Peter have endured or to make it any easier. Yet I also feel like there is so much I want to say. First I want to tell you about my afternoon at clinic. A few of us that were close to Mattie met in clinic today and did an art project in his honor. Jessie and Jenny organized the afternoon so that we could create something to leave in clinic that would always remind us of Mattie. We ended up making a box (of course) with the clinic art table and all of us sitting around it with Mattie. Maya directed the project for the most part, while I built it. This whole scenario was not only in honor of Mattie, but also made me miss the moments with him when he acted as the engineer, and I as the builder. I knew Mattie for less than a year and some how your amazing son managed to touch me in every way. The second thing I want to tell you is that I am SO ANGRY. I am really angry at this disease that has taken so much away from all of us. I am so angry it took Mattie. I guess I want you to know that because although I can never understand or feel what you and Peter are going through, I think the part that I can understand is the anger you have towards this horrible disease. Along those lines, I want you to know that I am very interested with helping with the foundation, in channeling my anger into helping others with osteosarcoma. This cause is so close to my heart for so many reasons. As so many people did, I loved Mattie and I miss Mattie. Above all else, I wanted to tell you that."

The final message is from my mom. My mom wrote, "I acknowledge that I have a dull ache in my heart for which there is no remedy. I continue to recall many happy moments of the past and routinely wake up and go to sleep with Mattie on my mind. So it was not surprising that this morning when I woke up at 4:00AM, I looked out my window and saw a brilliant Mattie Moon shining back at me. Alongside the moon was a brilliant star, all aglow like a stunning diamond against a deep blue sky and its fire and sparkle stood out against the inky background surrounding it. It was so spectacular a sight that I took it as a signal from Captain Mattie that he could see us from up above and was shining his star power for the world to see that he is NEVER far from those of us he left behind. I believe some magical power awakened me from sleep just so I could "see" my bright little Mattie Angel last night!"