Thursday, September 10, 2009

Thursday, September 10, 2009

Have you seen a cuter Pooh? Mattie at age two, dressed in his Halloween costume.

Poem of the day (thanks Jennifer G.): A Grandmother's Requiem ~ Rietta Bennett

We decided early on dear (Mattie),
that you were a gift of God.
A gift that brought patience
as we waited for the time of your birth.
A gift that made us remember
we are all a work in progress.
A gift that reminded us to pray
as all things are possible with God.
A gift that instilled courage
so that we could be an example of faith.
A gift that taught us to mourn
and know that we are blessed and comforted.
A gift that brought us together
to form tight, unbreakable bonds.
As you rest now in your new, perfect body,
intercede for us. Pray that we remain faithful.
Our life journey is difficult,
but we have the promise of eternal life.
So remember us,
until we meet again.




Peter and I go to bed and wake up with the same question on our minds.... how do we live our lives without Mattie? We really have no answers for this question, but one thing I know for sure is that I am in shock over Mattie's loss. I have moments when I cry and break down, but still operate in a very numb state, in which I am moving around and accomplishing things, but just feel lost and empty inside most of the day. Our life has gone from caring for a child, having a house filled with toys and childhood laughter and energy, to now a quiet existence where the only things we have to worry about is each other. It feels like we are returning back in time to when Peter and I were first married, however, the only difference is we have the memory of Mattie flooding our minds and our hearts, and we so long for the important missing piece in our family.

Peter, myself, and my parents headed to the funeral home today to sign paper work for Mattie's cremation, to look at urns, and discuss other ways to memorialize Mattie. Mattie's body was transferred from Georgetown Hospital yesterday to the funeral home yesterday, and Peter was asked to identify the body to confirm that it was indeed Mattie. This was NOT a task I joined him on. When Peter came back from the funeral home's morgue, he was very upset. Understandably! However, Peter did tell me that Mattie actually looked very good, and very much at peace. I guess we are putting our own hopes and desires into the interpretation of Mattie's last facial expression. I truly miss Mattie, but after the past several weeks of watching Mattie suffering in pain and slowly slipping away in front of me, I couldn't see him going on like this any longer. In fact when you lose someone in your life in such a traumatic fashion in makes the grieving process even more complicated.

I had the opportunity to look at cremation urns and other boxes that are used to store ashes. In fact there was a whole room of products to look at. However, here is the conclusion I came to! I don't like anything I saw. I find the whole thing depressing and nothing seems appropriate to carry Mattie in. What this tells me on a very cognitive level is that I am not ready to accept any of this, and frankly I am not sure when I will be. Mattie's body is getting cremated tomorrow, and I know that I will need to figure this all out soon. We talked to Mark, our funeral home representative, about the church ceremony as well. He was telling me that you can have a hearse and pall bearers even with a cremation, and he showed me the device used to carry the urn through the church. The whole thing made me very uncomfortable, and I keep reflecting on Peter's comments. Peter wants to memorialize Mattie and acknowledge his death, but he also wants people to leave the church appreciating Mattie for who he was, the bright, humorous, spirited, and creative kid that he was. Frankly seeing a hearse and pall bearers don't seem to capture Mattie's spirit for me, they just signify his finality and his death. The death of his spirit. So my gut feeling is that I will not elect to do the typical rituals and actions performed at a Catholic funeral.

After this taxing meeting, my parents took Peter and I out to lunch. We went to a restaurant that Mattie happened to love going to, and it was a strange experience going there without Mattie. In fact, what I figured out today is there is NO where you could put me where I wouldn't be thinking of Mattie. Everything I see and hear reminds me of him. I saw an oak tree today with acorns, and I immediately thought of Mattie. He loved collecting acorns and sorting them by ones with caps and those without them. I am happy that my parents are here with Peter and I, because they have helped us get out of the house, deal with some difficult tasks, and just be supportive through our very longs days. During lunch, I read my parents some of the beautiful e-mails we have been receiving, and in fact tonight, I will begin posting some of them.

After lunch, Peter drove us to see two churches in the District of Columbia. The first church is Holy Trinity. Holy Trinity is a Catholic church near Georgetown University's campus. Mattie was scheduled to attend this school on Sundays for Catholic education, but due to cancer, he was unable to experience this church's community. None the less, Rev. Jim Greenfield, our priest, has privileges at this church, and therefore we would like to have Mattie's funeral there. I was unable to get into the church today to see what it looked like because it was locked, but I was determined to find a way. I saw that children were playing in the church's school playground. So I went up to the teachers and asked them how I would get into the church because I was planning a funeral for my son. The teacher was mortified by what I told her and couldn't do enough to help me. She escorted me to the church administrative office, and as I kept telling Mattie's story, I found more and more people at the church felt compelled to help me. I took that as a good sign, and the right church to have Mattie's funeral in. Holy Trinity is an old church, but very simple with a federalist design. It is bright and open. We also went to visit St. Matthew's. St. Matthew's is a cathedral in DC, and it is quite elaborate and beautiful. When I walked into the St. Matthew's today (which I was familiar with), I immediately said "NO." The church has dark colors in it, and speaks solemn as soon as you enter the doors. So I have come to peace with having Mattie's funeral at Holy Trinity.

After our church trips we then drove to Arlington National Cemetery. My father's brother, who was an honor guard, is buried there. While visiting my uncle, we all landed up talking to his grave site and asking him if he was watching over Mattie up there. I so hope that Mattie is at peace, that he isn't alone, that someone is taking care of him, and that he is happy. These are my fears and worries, and because life isn't turning out how I hoped or planned, I also find that I land up questioning other things, like is there life after death? Everything I once accepted and believed in whole heartily, I now challenge.

When we arrived home, I sat down at the computer to try to write Mattie's obituary. I assure you, I don't wish this on any of you. It is a surreal experience to be doing any of this. I am not one of these people who reads many obituaries at all. So today I actually had to pull out the Washington Post and read several of them to get the gist of what content goes into them. The obituary should be published in this Sunday's Washington Post, so you can let me know how I did.

We want to thank the Doane family for the delicious chocolate cake and Earl Grey tea that you delivered to our home today. Mary I love the roses as well! Thanks for supporting us through our difficult days. We also want to thank Beth E. for a wonderful home cooked dinner and the wonderful berries you gave us for dessert. It was wonderful to see the card you attached to the dinner from many of our Andersen friends!

I would like to share four e-mails I received from many of supporters at the Georgetown University Hospital. The first message is from Dr. Snyder, Mattie's oncologist. Dr. Snyder wrote, "Dear Vicki and Peter, I have always known I wanted to be a pediatric oncologist. I became certain, and made life decisions based on that certainty, starting my sophomore year of college. I started working as a camp counselor at a camp for children with cancer for several summers during college; seeing the healthiest of these sick children. Working my way to the outpatient clinic as a medical student, and finally as a resident caring for children on the inpatient units. I told myself, if a patient dies and I can ‘handle’ it…I will be able to do this. I felt such a strong calling and still do. And I have had patients die; each different, each tragic, each unfair. They flood my memory now, one after another, their stories always sweet and always too short. Two of them, for certain, brought Patrick and I together. We have always thought of them as angels. I asked them on Tuesday to find Mattie and to take care of him. I know they will. Today, though, the emptiness I feel is profound. Today, I must confess, I am a mess. My heart aches for your loss, for my loss, for Linda and Debbi and Kathleen and Katie and Jenny and Jessie, Jey, Ann’s loss. Our collective loss is a vast chasm. But our collective love for Mattie and for you is enough to fill that chasm, to overflow that chasm, to spill into rivers of goodness, to irrigate fields empty of purpose and the harvest of this devotion we have for Mattie and for you will bring forth something so immense and wonderful beyond which we can imagine. This will happen. Of this too, I am certain. It will be one of Mattie’s greatest creations.
Thinking of you, All my love."

The second message is from one of Mattie's favorite PICU nurses. You may recall that Brenna was the nurse who designed the Sponge Bob breathing exercise while Mattie was recovering from his sternotomy. Brenna wrote, "Dear Vicki and Peter, There's so much that's been running through my head, and heart, today since the news of Mattie's passing. I truly can't imagine your heartache today, especially after a year of constant battle. But I do know that your family has profoundly affected all of us who've cared for Mattie this year. I remember the first time that I met the three of you; I was struck by the level of connection and commitment to each other. That you three were truly a team in Mattie's fight and a real force to be reckoned with. Mattie had so much trust in the two of you and knew that when YOU said that he needed to do or go through something unpleasant, that it really was what was in his best interest. And you reciprocated that trust in him and he was empowered by it. He knew that you would listen and be his voice to the new world of medicine that you'd all been thrust into. Getting to know your family throughout the past year has been a real privilege. I can honestly say that so far in my career, I've never met a pair of parents who took on their child's battle with the same level of commitment and determination. You are such incredible advocates and were able to truly contribute to his treatment and care. As a PICU nurse, I've witnessed the suffering of many children, and while I know that there are many, many healthy children in the world, it makes me more and more unsure of God's plan for Devin and I as we start to think about adding a child to our life. Did I subconsciously choose this path to prepare me for something bigger? We often have discussions, induced by situations I see at work, about how we would handle having a child with special needs or longterm illness. I feel that these children are sent by God to teach and inspire us all to do better, to be better. But not all of them are blessed enough to have parents with the ability to selflessly advocate the way that you, Vicki and Peter, were able to do for Mattie. Words can't describe how lucky Mattie was to have you as his parents. Mattie's courage inspired me, and yours has been equally inspirational. I don't know what God has in store for us, but I can only hope to face whatever's ahead with the same commitment to each other and our children. I hope that you know how much we will miss having your family's presence in the PICU. I know its an odd, and sort of backwards, statement, but seeing your faces always brought me hope. And, absolutely, I will miss Mattie. Even though I only cared for him a handful of times, I truly enjoyed it. Mattie made me think outside the box and be creative. He reminded why I went into pediatrics in the first place. He was so kind, so intelligent, and so, so funny. His sense of humor was beyond his seven years. "Mom, tell the sto-wey... Listen to my mutha, save all questions for the end. Lastly, I have to thank you, Vicki, for the blog. Even though reading it nightly has certainly 'brought work home' more than usual, your daily entries have opened my eyes to patient/family side of the ins and outs of dealing with a child's illness and the healthcare system. It has certainly effected my practice, the way I think about and support my patient's family and how I interact with them. I have no doubt that you will honor Mattie in great ways; I wouldn't expect anything less from the two of you! I know that he is proud of you and your strength. His spirit will guide you in using his legacy to help other children with osteosarcoma. As always, you are in my thoughts and prayers."


The third message is from one of our amazing HEM/ONC nurses. Tricia is a wonderful nurse, advocate, and has supported Peter and I in ways that are indescribable. You should also know that Mattie began his chemo in room 10 and also died in room 10. Tricia was with us on both occasions. Tricia wrote, "Vicki & Peter, I just wanted to let you guys know I am sending my thoughts & prayers for both of you during what undoubtedly is the most difficult time in your lives. I am so deeply saddened by Mattie's loss, but at the same time I am at peace now that his suffering has ended. I am praying that you will find strength to move forward with your lives and that somehow in the the future you will both share in finding the peace & happiness that you were robbed of over these past 13 months. You sincerely are two of the most amazing people I have had the honor of knowing, and it has been a privilege to provide care and support to all of you throughout this journey. Please take care of yourselves, and know that your handsome angel was destined to fulfill different plans from those we wished for him and for the rest of our days here on earth he will live on in the legacy that he has left behind. So many people have been impacted by Mattie's life, and I for one will always cherish the times I cared for your precious little boy. My entire family shares in your sadness, and we all send loving prayers to you both."



The final message is from Anna, Mattie's physical therapist. I told Anna that if anyone could have gotten Mattie to walk, it would have been her! Anna wrote, "Dearest Vicki and Peter, My heart aches for you. I am so sorry that our Mattie has passed away. I would also like to apologize for not e-mailing you yesterday. I needed to sit with my emotions. I cannot tell you how glad I am that I was able to say goodbye to Mattie at the hospital yesterday. Doing so brought a peace to my soul that has not rested softly since Mattie’s relapse. Being able to embrace you and Peter with all the strength I could muster only begins to scratch the surface of what I wish I could do for you right now. Mattie is an angel etched in my memory for eternity. As I lay in bed last night, unable to sleep, I was flooded with memory after memory of precious moments with you and Mattie. I am so honored to have been able to fight with Mattie over the past year. Vicki and Peter, I thank you both for letting me into your lives and for teaching me so much about love, strength, courage, and hope. Vicki you mentioned that for the moment the memories of hospital sounds and Mattie’s lasts breaths are all you can remember. Let me help you and Peter along your path to some other memories….Do your remember the squirt fish???? We practically had a full on water fight right in the hospital!!! I had to cover myself in towels to keep my clothes dry. Do you remember Linda coming out into the hall with a bucket on her head ready to joint the squirt fight?! How about the time we blew up as many balloons as possible, only to let them go flying through the air in the hospital hall. Mattie loved watching the musical balloon medley. He had a way of identifying the most beautiful moment and breathing it in. I could see the artistic twinkle in his eye when our activity had culminated to perfection. It was almost as if he was the conductor of a symphony and he had reached the point where he could just sit back and enjoy the musical bliss. I loved that immensely about Mattie. He had such depth. Oh Peter and Vicki, I will continue to share each and every memory I have of Mattie with you. I just wish I could do more. Just know that you have a HUGE support network and you just have to say the word and we’ll do anything you need. I cannot begin to imagine how you must feel right now but, my heart is with you. You may already know the saying “It’s not the years in your life that count. It’s the LIFE in your years.” Mattie had so much LIFE in him!!!! And it is that SPIRIT that surrounds us and will continue to surround us each day. It is contagious and I know that anyone who knew Mattie knows exactly what I mean. I could still see it in his face when I said goodbye yesterday. That’s our Mattie!"

Lastly, tonight we received an e-mail from Guillermo. Guillermo works for Voxiva (Peter's company) in Peru. Guillermo wrote us a beautiful e-mail which stated,
"We thought on how to express our feelings about Mattie and you, so we decided to re-record our Mattie’s song: “My Little Child” for you. We’ll miss him, but what Mattie created in all of our hearts is his best legacy. He seeded values as friendship and solidarity among all the people that followed his incredible fight. Let’s preserve those seeds and let’s use them with other children that may need support and don’t have the luck to have you as parents." Guillermo, Family and Apple Band Friends


I will try to find a way to attach a link to this beautiful song, but in the mean time, here are the touching lyrics.

My Little Child
To our friend Mattie

(verse)
When we tucked him in at night
kissed his cheeks and dimmed the lights
we could see the peace reflected in his eyes
Then we learned the awful news
he'd face a thing he didn't choose
and we wondered what was right and what to do

(prechorus)
What could we do? we'd see it through

(chorus)
My Little Child
we'll be fine just recalling his magical smile
My Little Child
we'll bring peace to his freedom
My Little Child

(verse)
So let's take from what we've learned
what we've learned from living in hell
it's the time to say it's over without regrets
We hold the future in our lives
let's be as brave as Mattie was
we may help so many children with all we've got

(bridge)
Maybe we are all sad
for the pain we feel today
but it's time to wipe out the tears
there's another way to have him here
raising flags of Mattie's will around
here, there and everywhere
It´s time to let him go
let's wave the flying dove

(chorus)
My Little Child
we'll be fine just recalling his magical smile
My Little Child
we'll bring peace to his freedom
My Little Child