Thursday, September 17, 2009Getting Mattie to sit still in a high chair was a feat. Food never motivated or interested him. However, in this picture, you may notice he has string beans all over his face. Right from the beginning he always LOVED vegetables, and strongly disliked sweet things!
Poem of the day (Thank you Kristi for another great one!)
My Mom is a Survivor
My Mom is a survivor, or so I've heard it said.
But I hear her crying at night when all others are in bed.
I watch her lay awake at night and go to hold her hand.
She doesn't know I'm with her to help her understand.
But like the sands on the beach that never wash away...
I watch over my surviving mom, who thinks of me each day.
She wears a smile for others... a smile of disguise.
But through Heaven's door I see tears flowing from her eyes.
My Mom tries to cope with death to keep my memory alive.
But anyone who knows her knows it is her way to survive.
As I watch over my surviving mom... through Heaven's open door.
I try to tell her that angels protect me forever more.
But I know that doesn't help her or ease the burden she bears.
So if you get a chance, go visit her... and show her that you care.
For no matter what she says... no matter what she feels.
My surviving mom has a broken heart that time won't ever heal!
This morning Peter and I met with Peter Keefe. Peter K. is a fellow SSSAS parent, and our sons were in Kindergarten together over a year ago. Peter and his wife, Debbie, have been a crucial part of Team Mattie this year. In addition, to all their wonderful meals, visits, and letters, Peter K. has offered to help guide us through the process of creating a Foundation. We met with him and an attorney today who specializes in this area. We felt very well guided and supported, and we can't thank Peter K. enough for his willingness to share his time, skills, expertise, and contacts with us. What we did to deserve friends like this, I have no idea, but I am deeply touched and honored to have Peter K. helping us and value his insights and guidance. As I was getting an education today in the world of Foundations, I began to understand that this is not only an exciting proposition to undertake, but it is also overwhelming. It takes a great deal of funding to support such a venture, and being an educator and mental health professional, raising funds and soliciting funds are not necessarily my strong suit. Fortunately I have my Peter and a wonderful support system with all sorts of skills, and what I learned today from observing Peter K., is that he is as passionate about this Foundation as we are. So whatever insecurities or doubts I have about my abilities to do this, I will address, and rise to the occasion. In a way, I feel as if this Foundation will keep Mattie's memory alive and will serve a purpose for his 13 months of intense suffering. However, as several of you wrote to me today, Mattie will always be remembered whether the Foundation is started or not. Thank you for saying that!
After we met with Peter K., we headed to have lunch together. Peter and I spoke more about the Foundation, and a whole host of issues. However, as only Peter can do, he got me to slow down and think, and as he kept talking, I started to cry and cry. At one point the waiter came over to ask us something, and he just did not know what to make out of me. There are times, I close my eyes and I try to picture what Mattie looked like, I picture those beautiful eyes looking at mine, and one of the things I truly miss is his putting his cheeks against mine. He had the softest and sweetest face, and I long to see that beautiful face again. In fact on the day he died in the hospital, I sat next to him with my cheek against his. It is something we liked to do with each other. Mattie and I had a deep love for each other, after all, Peter did not nick name Mattie "Momma lover" for no reason. It is hard to give your heart and soul to such a special being for seven years, and then not have him with me today. Where does all the love I have for him go, where do I put it? I feel a pit in my stomach most days and a deep sense of emptiness that is almost impossible to describe.
While Peter and I were at the mall today picking up some things, we observed two parents with their son. Guess what their son's name was? Matthew, and they nick named him Mattie. Perfect! As they were calling him, Peter and I both looked at each other, and of course no words were needed. Passing the Lego store was also an impossible task as well, and in the window we spotted a new fire station set Mattie would have just loved. As a parent you get used to playing and doing the things your child likes. Peter and I have been inundated with children's TV, videos, games, and toys for seven years. Now without Mattie, it is almost as if we need to redefine our interests and what we do. In many ways we are lost and trying to find our identities again!
I have forgotten about the kiosks in the mall as well, since I haven't been shopping in over a year. Today a salesperson walked up to me from a kiosk. He was selling facial creams and so forth. He started on me about how I need to take better care of my face and skin. Not only was this NOT a good tactic to take with me, but I let him have it. I told him since he was SO bold, I was going to return the favor and tell him why I hadn't taken care of myself for 13 months. I told him about Mattie and that he died. I think this was a major reality check to him! After I told him, he couldn't do enough to try to make me happy, but the damage was already done.
This afternoon, I came home and I slept for hours. I was feeling extremely fatigued and ill. The only thing I knew was going to help was to just shut my eyes. I typically don't like to nap because I have such trouble sleeping at night, but I gave in and followed what my body was telling me to do.
Tonight, I was able to order some things I wanted for Mattie's funeral, and I felt somewhat productive on that front. We want to thank the Ferguson Family for a wonderful home cooked dinner, my favorite brownies!!!, for the book, and lovely card. Thank you for your continued support, it means a lot to us!
I would like to share six messages I received today. The first message is from Mattie's oncologist. Dr. Kristen Snyder writes to me everyday, and I truly value her support. Kristen wrote, "Dear Vicki and Peter-- I went to clinic today for the first time since I saw you last. Your faces, your questions, your thoughts, your strength, bargaining with Mattie to try to get an exam : ) These things I miss."
The second message is from Miki. Miki was one of Mattie's outstanding HEM/ONC nurses. Miki always admired Mattie's creativity and projects and in fact Miki very thoughtfully gave Mattie a Lego set the last week he was in the hospital. Miki wrote, "I can't stop thinking about you and Peter everyday. Every morning, I read your blog to find out how you day had been yesterday. I can feel your pain like mine, I can feel the big hole in your heart like the one in my heart. It might take some time before you and Peter find the definite purpose and direction in your life again. But it will come, because you have each other. Thinking of you with all my heart."
The third message is from Liz, one of my former teaching assistants and former students. Liz wrote, "As so many others are, I'm just writing to let you know that I still wake up every morning with Mattie, you, and Peter as one of the first things on my mind. In fact, I now bring my computer into my baby's nursery each morning while she is playing with her mobile to read your blog. The last two pictures you have posted of Mattie have been so powerful. It's pretty ridiculous how unfair life is. I am stuck in that loop right now. One thing I wanted to share with you.I don't know if you've ever seen the movie City of Angels with Nicolas Cage but there is a part in it that makes me think of Mattie. (In case you haven't seen it, the premise is that angels are actually all around us, watching over us, and their job is to help people transition from life to afterlife.) At the beginning of the movie, there are various scenes of angels taking people by the hand and taking them on. The one scene that always struck me was Nicholas Cage with a little girl in the hospital--he has her by the hand and is leading her away when she says, "Mommy won't understand." He gently responds, "One day she will." I guess this could be taken a lot of ways but I always felt like he was telling her that one day the mom would join her daughter and understand that her baby had not been alone. In fact, she had been cared for from the moment she left her side. When you wrote of Mattie's last night, you said he looked at you at one point and said there was someone else in the room. I can't help think about that movie and think that Mattie really was being looked over by angels and had his own personal escort to heaven. And we can be sure that heaven is filled with Legos, Cupcakes, and Speedy Red. :-)"
The fourth message is from one of my wonderful former students. Julie wrote, "I just finished reading your blog and I can't tell you how sorry I am for the pain that you are feeling. I wish there was something I could do to make this better, but I know that there is not. I wanted to let you know that you continue to be my professor and educator even in your most difficult times because through you I am learning about the grieving process. Your blog is teaching me how to work with grieving children and adults. I have already used what I have learned from you in my school this year and will continue to do so. You are truly an educator! I have been thinking a lot about you and the pain that you are facing and I am not sure how you are doing it. You are one of the strongest people I have ever known and truly an inspiration to me. Through your family I have learned the importance of trust and openness. The amount of respect and loyalty that was exhibited by all of you during these trying times has been one I hope to emulate when I have my own family. I didn't get the privilege of meeting Mattie in person but through you blogging I came to have an understanding of what a remarkable kid he is. His tenacity in everything he did and his ability to trust others during the most terrifying of times spoke volumes to who he was. I have had the opportunity to work with several hundred children throughout my teaching career and now school counseling job and I have no doubt that Mattie was a unique and very special-one that every teacher or school staff that had the opportunity to work with him will always remember. He was one of those kids that leave a lasting memory and can never be forgotten! One thing I am having a hard time understanding since Mattie's passing is why has this happened to such a remarkable family. Unfortunately, I have meet several parents who I question whether they should have been parents because they don't show 1/100000 of the love and support you have for Mattie yet they have very healthy children. I know I will never find this answer, but it just seems so incredibly unfair. Vicki my friends and family are thinking about you and I have asked my dad, grandma and grandpa who have passed away to watch over Mattie and take care of him. I know they will do their part to make sure he is happy. "
The fifth message is from a colleague of mine. Martha wrote, "I could not start my day without reflecting on today's Blog. Just like so many are now expressing, my life will forever be changed because from the first day I began reading the Blog I have not been able to start my day without having your life as an inspiration to me. To know now that you will establish a foundation to continue that inspiration for all of us makes me feel calm and assured that you will use the talent you have to provide us with outlets for the growth we have known through your sharing of this journey you and Peter and Mattie have made this year. At this moment, I feel particularly moved to encourage work on changing the way hospitals -- all individuals ones meets there -- to understand and care about the individuals who come through the doors seeking relief from pain and suffering. This seems so basic to speaking to what you all have suffered, and what each of us who have experienced personally, that it is a place I can help. Some few give exemplary care, while most make your pain and suffering worse or even make you feel guilty for being there! There are many ways I can likely help you carry out the goals you will set for Mattie's foundation. I look forward to having a way to fulfill my need to help in your cause. Thank you for your selfless desire to share your love for Mattie; your skills developed through years of living, loving and training; and your brilliant Vicki-self. Your love for Mattie and his continued presence with you will lead you to help all of us who have joined you in this year of sadness to make the world a better place for all who suffer. "
The final message is from one of Linda's former childlife interns. Laura wrote, "Words can not express how sorry I am that Mattie is no longer physically here. It is truly amazing to hear about all that he taught EVERYONE he met and so many people that he did not even know him personally. The dedication you had to him and continue to have, the community, maintaining relationships and normalcy as best as possible, communicating what you all need and do not need, thinking of others even during the toughest of tough times, and the way you even continue to keep everyone informed of the struggles and the good times, Mattie’s legacy will outlast all of us that ever met him. I hate to imagine families feeling distraught, lost for comprehension, not knowing where to turn upon a diagnosis of osteosarcoma, but there will unfortunately be more families and I can foresee them finding resources through your organization and finding hope, strength, courage, and support. I’m glad there are pediatric medical subspecialties and support services, like child life. Children are not just mini-adults like once thought. However, in many ways children and adults do have similar thoughts. I hear parallels between the story you wrote about with Dr. Biel telling you how Mattie enacted a scene where only Brandon and Jocelyn were allowed in his world, and how you are saying your world is the PICU now. Mattie understood these concepts and explored where he belonged through play, yet at many times, he also often enjoyed and welcomed the company of the world outside the hospital, including welcoming in new people like me, but more importantly, his friends even when around the same time he was expressing not fitting in with that world, he still laughed and existed almost simultaneously torn in multiple directions. I can't say I understand how you feel, but the descriptions sound a lot like how Mattie felt, the pain that extends long past the physical scars but is eased through family and friendship. I think back to the post Vicki wrote about how you looked up and saw Cody’s tile on the ceiling of the Lombardi Clinic and the feelings that evoked in you, and how for a very long time many people will feel seeing Mattie’s work and the laughter that ensued his accomplishments after he worked with such diligence and precision and decorating, making the hospital space as home-like as possible. Each patient and family teaches everyone something unique and beneficial, but through your dedication to the blog we have all learned how to be better professionals, people, friends, family members, and citizens. Mattie’s passing makes me sad, I had this dream of him beating all the odds, I think we all did, but he isn’t gone, I don’t think he ever will be. We all see him in boxes, in the worms, in cockroaches, in the Legos, in balloons, in music, in fighting through tough times, in hard work, in hope, in whispers, in surprises, in laughter. 100 years from now, when everyone that knew Mattie has joined his company, I believe people still on Earth will know his name because of the lessons he has taught all of us, the way he continues to evoke emotion in all our hearts, and the way so many people especially you and Peter are leaving his legacy. Mattie is always going to be a part of me. Thank you for raising Mattie in the way in which you modeled advocacy, parental love, courage, strength, and hope and continue to teach the lessons he taught us with your help."
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