Saturday, August 29, 2009

Saturday, August 29, 2009

Tonight's Mattie creation is made out of model magic. Mattie designed and colored a model magic birthday cake for Peter, since we celebrated his birthday last year in the PICU.

Quote of the day: "Whoever survives a test, whatever it may be, must tell the story. That is his duty." ~ Elie Wiesel

Charlie sent me the above quote and it caught my attention.
Peter and I have been asked to face life's worst test and challenge this year, having a child diagnosed with cancer. That seemed like a nightmare of a test to prepare for, but I assure you that was nothing in comparison to the test we have been asked to study for now. The test of facing an unnatural death, the death of a child, my child! There are a ton of how to guides for parents to follow, but I doubt anyone would dare to take on a how to guide for saying good-bye to your child. Needless to say, I agree with this quote, that when faced with such a life altering threat and test, it must be written about. This blog captures the story of Mattie's life and his demise. However, it is my hope that through my writings that Mattie's spirit, vivaciousness, intelligence, wit, and amazing humor is what you remember. I feel it is my duty to keep writing so that no one forgets Mattie, his heroic battle, and the evils of Osteosarcoma. In fact, one of my colleagues asked me to consider writing the blog through our grieving process as well, and I am thinking about that.

Mattie had a very difficult time falling asleep last night. In fact, Peter and I did not get to bed until 4am. Mattie continues to experience more pain and nausea today. In addition, having intense pain just exacerbates his anxiety. So Peter and I felt like we were putting out one fire after another today! Mattie was so wiped out from the pain and being pumped with pain medication, that he slept until 3pm today. However, even when he awoke, he did not want to leave bed. He actually stayed in bed until 7pm. It was only then that we coaxed him out of bed and now he is sitting on the couch in our living room. However, what you need to realize is even though Mattie is in bed, he doesn't want to be left alone. Peter and I try to take turns being captured in one room and place for hours, but there are times, being so quarantined is virtually impossible. In a way, being by Mattie's side 24/7 requires a level of selflessness that I am having trouble even describing. But keep in mind this 24/7 ritual, has been going on now for over a year, and the fact that Peter and I haven't cracked up yet really is a testament to the power of love and the overwhelming passion to do the right thing for Mattie.

As I was talking to Ann last night, one of the questions that I posed to her was, am I still a mom once Mattie dies? After all, don't you need a child to care for in order to maintain this title? Yes I will always be Mattie's mom forever, but really I won't be a mom. This is a role that has identified me for seven years, a role that enabled me to interact with a school community and other moms. In a way, if I am no longer a mom, I no longer am a part of the communities I have come to embrace over the past several years. So to me, it is a loss on a very profound level. I told Ann, that prior to Mattie, I dressed differently, I am sure all moms did. But once you have children, you realize you need a wardrobe that is easily washable. Once I lose Mattie, how will I dress? What will I do? I have no answers to these questions, but Ann's response remains with me today. She assured me that I will always be a mom, because raising Mattie has impacted how I see, view, and experience the world. As a mom you develop a certain skill set, that will never leave you. I continue to reflect on Ann's comments, and her confidence she has in me as a mother.

Karen and my parents went out to lunch together today, and when they came back, they brought us lunch. I ate first with my mom and Karen out on the deck and we had a chance to talk about one of my main fears, how to live life without a raising a child. However, in my house right now, all meaningful conversations have to happen within minutes, because Mattie is always pulling on one of us to come back so he can see us and we can physically be in his presence. So food always goes down too quickly and you always feel rushed.

Later this afternoon, Peter drove Karen to the train station. She is headed back to NYC today, after spending four days with us. Karen tried to help us, but it is unfortunate that Mattie isn't open to others, in order for Peter and I to get some sort of break. I am sure it is frustrating for those who love us to feel helpless while in our presence, but we did appreciate Karen's company and value her support.

My main excuse for getting out of the house tonight was to do the laundry in our complex. It is a sad commentary I think when doing laundry is the highlight of my day. But there you have it. While walking back and forth doing this mindless task, I found myself reflecting on the importance of emotional bonds and connections between an ill person and his/her caregiver. Modern medicine is SO focused on numbers, test results, and data. Treatment must be quantifiable, in order to measure its effectiveness. I am sure all of this is driven to some extent, not only by the profession, but by insurance companies. None the less, what about the medicinal power of love and deep emotional respect and compassion? These are vital factors that are NEVER talked about in medicine much less assessed, most likely because it is hard to quantify such intangible concepts, much less figure out how these factors impact someone's health and recovery. I get that really! But this year I have seen and experienced the power of these intangible concepts, and frankly I think the medical profession is missing a good 90% of patient care by NOT focusing on the emotional bonds and connections we make with our loved ones. Why do you think Mattie won't let Peter and I leave his side? It isn't about control, it is about comfort, love, and security. Certainly if you feel all these emotional things, then your chances of recovering and being motivated to take care of yourself are much higher. This week alone I had the rare opportunity to spend almost everyday with Ann's father, Sully, in his assisted living facility. I went to visit Sully because I knew he wasn't feeling well, and would also be missing Ann's presence. However, something truly amazing happened within a seven day period of time. Sully's health began to rapidly decline with each day Ann was gone so much so that it was quite visible that his condition was getting worse. Yes Sully had myself and Tanja (a good friend of Ann's) visiting him each day, and though we thought we were helping to manage the situation, I wasn't factoring in an important part of the equation. The medicinal properties of Ann herself. Upon Ann's return I realized something very profound. After Sully spent two days with her, and she sat by his side and nurtured him, fed him, and talked with him, he started to pull out of his decline. I am not sure I would have believed it, if I did not see it myself, but I tell you this story because none of us should ever under estimate the power of love and the importance of emotional connections on our physical health. The psychological world most definitely influences the physical world and symptoms, and I saw it dramatically for myself with Sully. Sure Tanja and myself could attempt to feed Sully and talk with him, as we did, but the bond that Ann has with her father enabled her to know just what techniques and strategies work for him. In addition, I could see how he responded to her voice and the impact this had on his ability to focus, concentrate, and heal. So I guess what I am saying is for all family caregivers out there who doubt for a second what you are doing, stop and reflect on the profound impact you are making to the person you are caring for. This person relies on you, loves you, needs you, and trusts you implicitly to make the right and humane decisions for treatment. I guess seeing Sully perk up this week inspired and renewed my passion for the importance of my role as a caregiver for Mattie and I wanted to share this with you.

We would like to thank the Putnam family for another wonderful dinner. Grace, thank you for the chocolate covered strawberries, they are very special, as is the support you continue to give our family.


I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I don't know why the end has to be so hard. Mattie is very anxious and I think he tries to control whatever he can as a result. Who is around him, what they can do (talk, eat), what and how to play or interact. This makes life almost impossible as you are someone who naturally connects with others, who needs to be out and about. Mattie's circle keeps getting smaller and smaller and it becomes almost impossible to support him. I wish I could reach out across the divide and send you a hug, endurance, even better, a miracle but all I can do right now is think of you (and I do) and pray for you all. As for your reaction to Mattie's condition, although you might be one who normally cries, the mother and caretaker in you knows that is not the reaction that will help Mattie and so you don't cry and don't vocalize how you feel. I wish there was a way to give you the freedom to shed those tears, I hear your cries in the blog and my heart cries in sympathy. I hope today is a better day."


The second message is from a fellow SSSAS parent who I met while Mattie was in kindergarten. Olivia's message moved me deeply and I wanted to share it with you. Thank you Olivia for taking the time to reflect and write to me today. Olivia wrote, "This morning, as I have for hundreds of mornings this past year, I began my day with the personal, prayerful ritual of reading your daily blog. As many have shared, reading your blog about Mattie has become part of my daily routine – always recognizing how you have said that you will never accept this as ‘normal’ even after hundreds of days of living this. I hesitate to write, as someone so on the edge of your world I feel unworthy to share my thoughts with you – what could I possibly offer that would provide comfort, warmth, healing, solidarity? How might my words be awkward and offend unintentionally? But, sometimes, something inside pulls us, someone greater than we are calls us . . . to be open and honest, no matter how it is perceived. So I share this insight with you.

In my mind’s eye, reading your blog has become like the ritual of daily mass for me. As I click on the http://www.mattiebear.blogspot/ each morning, I take a breath, unsure of what I will read that the last day, the last night has brought you. The opening quote you post, is like the first reading. It prepares me for where you have journeyed in the past 24 hours – what wisdom has come in your path. As you write your entry about the activities and people of your day - the GU nurses, the surgeons, the therapists, the patient advocates, the visitors, the school friends, the former students, the colleagues, the family members – I picture these people representing the walks of life, the people of all our worlds, who come into our lives and have a gift to share. The face of God in our lives. People around the world, through your blog, are with you now . . . and have been shared with me now. The world has been made smaller for me. As they share their support, advice, kindnesses with you . . . it’s like hearing stories of the holy, everyday people of our early church – when people needed people more and appreciated the value of a few good words, a cup of tea, a back rub, a lunchtime visit, a letter or phone call – these weren’t huge deeds they did involving lots of money. It was the gift of time and love they gave in the name of community and faith.

Then, as you share your own reactions and insights about these people and how they have treated Mattie or how Mattie’s health and feelings are that day . . . I feel as if I am hearing the Gospel. But, rather than the author being one of the four traditional Gospel writers, each morning I hear the voice of a woman. The voice of a mother. And, while I hesitate to make this too heavy in symbolism, this is what I am reminded of: Mary and Jesus. Mother and Son. A single person, a boy, a man, who was born unto this earth to die. A mother who has to endure the pain of seeing her son suffer, for what earthly reason I cannot fathom. . . though I have been witness to the unbounded love that has taken root in others – THOUSANDS who hear your words, THOUSANDS who know Mattie’s story - because of his tremendous life and, so sadly, his tremendous suffering. I have heard in your blog entries, all the Gospel stories – truly. I have read of the trials and lessons of sacrifice, fortitude, using one’s gifts, forgiveness, humility, understanding, cooperation, prayer, suffering, arrogance, family, rejection of material goods, simplicity, spousal love, parental love, neighborly love. And, I know I will one day read the passion story. I try to remember that when we are ‘reborn’ into this Christian life through our baptismal promise, we accept that our story is a story of life and death and resurrection – they are all part of God’s promise for us. But, somehow, for all beauty of that resurrection story, I can’t seem to see its beauty yet for a beautiful seven-year old boy named Mattie. So, I continue to pray.

When I read of you and Peter changing Mattie’s central line dressing and moving around wheelchairs, and looking for prescriptions and changing wet bed sheets, I read of the love of parents – of true and humble servants. You are such witnesses to God’s call to all of us to serve – it was His last will and testament. “So when he had washed their feet and put his garments back on and reclined at the table again, he said to them, “Do you realize what I have done for you? You call me ‘teacher’ and ‘master,’ and rightly so, for indeed I am. If I therefore, the master and teacher, have washed your feet, you ought to wash one another’s feet. I have given you a model, so that as I have done for you, you should also do” (John 13:12-15.). When you wonder what more you could have done for Mattie, I think that you have done what you were called to do when God gave him to you – to love and to serve him.

When you talk of the families who have brought you a warm lunch or a special dinner, I think of our gathering around the communion table to be fed. Eucharist is a very personal sacrament, a mystery to me. Yet, in its pure and simple form before consecration it is bread and wine. It is food. What it becomes in my acceptance of it, in my reception, is to me the sacrament of community. Sharing in one bread, one body. The food that you write others have given to you, daily this year, is a witness to me of the sustenance of friendship and community that we all need to nourish us and to heal us, physically and spiritually.

You wondered what the plan was for you, for this suffering of Mattie’s and I can’t imagine what it is that a little boy would be born to suffer. And, that has made me pray over the story of our Christianity. I keep meditating over the words of God’s love for us and how it often is intertwined with sacrifice: Those He predestined, He likewise called; those He called, He likewise justified; those He justified, He in turn glorified. If God is for us, who can be against us? He did not spare his only son, but handed him over for the sake of us all. It’s too big for me to understand. So, I continue to pray.

I wish I had healing power, Vicki and Peter. I wish I could change this nightmare of suffering and loss. I am sorry that I only have my friendship and prayers to offer. Please know that Mattie, that you both, that this blog which has been like scripture for me, leading me to love more, to believe more, to forgive more, to accept more, to slow down more, to reach out more . . . have changed my life. That is a resurrection story – maybe not the resurrection story – but resurrection story for me, perhaps. Through Mattie’s life and suffering, new life has been born in me. I make it my promise to you to walk in honor of and witness to the life-giving love you and Mattie have shared.

May God bless Mattie and you and Peter with his grace, peace and comfort all the days of your lives."