Tuesday, September 15, 2009

Tuesday, September 15, 2009

I thought it would be appropriate to post Mattie's birth picture tonight. Mattie was born on April 4, 2002 at Virginia Hospital Center. A week ago today Mattie died, and I am hoping despite this great sadness, we can reflect on the beautiful baby that he was and always will be.

Poem of the day (Thank you Kristi!):

TRY TO UNDERSTAND by Susan R. Shipman

Last night while I was trying to sleep.

My son's voice I did hear

I open my eyes and looked around,

But he did not appear.
He said, "Mom, you've got to listen,

You've got to understand

God didn't take me from you, mom

He only took my hand.
When I called out in pain that night,

The instant that I died,

He reached down and took my hand,

And pulled me to His side.
He pulled me up and saved me

From the misery and pain.

My body was hurt so badly inside,

I could never be the same.
My search is really over now,

I've found happiness within,

All the answers to my empty dreams

And all that might have been.
I love you all and miss you so,

And I'll always be nearby.

My body's gone forever,

But my spirit will never die!
And so, you must all go on now,

Live one day at a time.

Just understand-God did not take me from you,

He only took my hand.

This morning I received an e-mail from Mattie's doctor, Dr. Kristen Snyder. She acknowledged that a week ago at 7:15am, Mattie died. Her exact words were, "No day since has been the same." I couldn't agree more with Kristen. As seven days have past, I can't say I feel any better, that I am accepting this news any more, or that I am seeing a way to manage this pain, and continue on with our lives. Mattie has left a permanent hole in our hearts, lives, and daily routine. Peter and I are lost, directionless, and looking deeply for meaning and purpose to our lives.

As is typical for me, I couldn't fall asleep last night. Despite having full days, without napping, I can't seem to shut my mind off and go to sleep before 3am. I continue to wonder how I actually function on such little sleep, but I do believe that living under constant and intense stress for over a year has programmed my body to be in a hyper alert mode. I think it will take me several months to return to some sort of normalcy with sleep. I find at night, my mind drifts to Mattie, and all the things I miss about him. Our home is empty and the silence is deafening at times. His things are all around us, his art work is everywhere, and his Lego creations line every part of our floors.

This morning, I had the opportunity to meet up with Ellen (Charlotte's mom) and Christine (Campbell's mom). Last week when we had lunch together, they suggested that we meet weekly to walk and reconnect. Since I haven't had any physical exercise in 13 months, the notion was welcomed. Of course for me letting others back into my life is also a major step forward because I continue to find as I interact with more people, I realize just how PROFOUNDLY different my world is. Of course being different sometimes is a good thing, but in our case being different as a result of cancer ravaging our life, is a completely different story. It was nice to chat with Ellen and Christine and to exchange stories, feelings, and thoughts, however, after an hour of walking, I had absolutely had it. Every aspect of me was tired by that point. I can see that staying up late and balancing Mattie's care has taken a toll on me emotionally and physically. It is my hope that with each week of walking, that I reclaim more of my physical energy back.

After walking, I met with Ann and her parents. Catherine, a mutual friend of ours from RCC, was also visiting Ann. Catherine and I hadn't seen in each other in a while, so we had the opportunity to reconnect and to also talk about Mattie and our families. So in a way, today was a day about reconnecting, trying to find one's self again, and it was also a day, where I learned more about the impact Mattie has had in other people's lives. All I can say is Mattie was a remarkable fellow and he was only 7, yet he clearly made a lasting impression on all those he knew.

I had the opportunity to hear from two women today that I have gotten to know over this year. One is Chris, Sammie's mom. Many of you are familiar with Sammie's story. Sammie is a beautiful teenager losing the battle to Osteosarcoma in California. I also heard from Kerry, who was a mom I met at Georgetown's PICU. Six months ago Kerry lost her son, Finn, to a battle with Cystic Fibrosis. Both moms e-mailed me to let me know that they understand EXACTLY how I feel. They both have isolated themselves from the world, and they too admit to the impact that their sick children has on their lives and relationships. Not that I am happy to hear this news, I am actually greatly saddened that so many other parents are out their suffering like us, but I guess I found great strength in hearing that I wasn't alone. Especially since I am not a person to typically isolate myself, nor am I a person normally at a loss for words.

I was e-mailing my lifetime friend, Karen, back and forth today. She always checks in daily to see how I am spending my day. Karen understands right now that I need to do whatever it is that helps me "function." I like her word, 'function,' because that is the best description I can put on how I feel about my life now. I continue to be very grateful that Peter is on compassionate leave. Because we need this time together, and I find it really does take a concerted effort each day to wake up, get things done, and try to live a life without Mattie.

We would like to thank the Tilch family tonight for a wonderful home cooked dinner, and I can't thank you enough for adding another green friend to our home. We appreciate your continued support of us!

I would like to end tonight's posting with three messages I received today. The first message is from a former student of mine. Laura wrote, "I have been reading your blog for many months and was so sad last week to read about Mattie dying. I know there are no words that I can say to ease your pain, but please know I will continue to pray for you. I have been debating for days of what to say and there is nothing I can say. Every day I read your comments and am moved to tears. I am inspired by you and Mattie. What a courageous little boy and mother you are. When I used to sit in your class, I had the highest regard and respect for you. But, over this past year, I can't even express how you have impacted my life. I am moved by who you are as a person and mother. You and Mattie amaze me. You two have taught me lessons about life from afar. I know nothing to make life better, but I promise you, you have many angels watching out for you, Peter, and Mattie. I hear your pain and feel it when I read the blog, but nothing compared to what you and Peter experience each day. Thank you for sharing Mattie with me and the rest of the world, what a treasure he is."

The second message is from one of Mattie's preschool teachers at RCC. Lana wrote, "Like so many of your blog "followers" and people who loved Mattie, I too, have had trouble putting my many feelings into words....but here goes! Actually, a lot of your experiences reminded me of my father's passing from Mesothelioma, the asbestos related lung cancer. The fluid filling his abdomen, the pain, but mostly the "death rattle." I tell people that at one point in his final hours, I went in the hallway to escape the sound but it was like Poe's "The Telltale Heart," echoing off the walls. Then this morning's beautiful picture of Mattie in the snow, really hit me. I calculated when that photo would have been taken...December '02. My Dad died on December 1, 2002 in Kentucky. That was the snow storm that we had to outrun to get home. We left Kentucky at 4AM, and got home just in time to be snowed in. Friends had left flowers and soup....two things to warm my soul! I've always loved how we in this area just slow down when it snows, and that was just what I needed. Last week when the awful news came, I went to RCC, a place where I knew I would find some of my colleagues, and a place where I would find support. After some tears, Margaret and I began sharing our "Vicki" memories! First, of course, was the gingerbread houses! Another for me was our first conference, when Margaret opened the meeting by saying "First or all, we are so happy to have Mattie in our class!"...and you burst into tears! (We actually had 2 Mom's burst into tears that morning....both for "good" reasons, but it still made it a memorable day!) When we hear that a new student is coming to us after a difficult year in another school we are sort of on alert. And as so frequently happens, we find ourselves looking at each other in a puzzled way saying "whaaat?" So began the year of having our Mattie helper arrive a little early, always with something to share....his new shoes, a pocketful of acorns, or a beautiful dandelion! I have to also acknowledge my favorite Peter memory.....the work session on RCC's mission statement. I don't think it would be a surprise to say that the teachers were not thrilled with coming in on a Saturday morning! But Peter was so passionate he drew us in. I remember thinking, "sheesh, this family has already "moved on", and here they are, still supporting and championing what we do here". While I will tell anybody that I have the BEST job in the world, seeing Peter's enthusiasm that morning, made it even better! In closing, of course, I've been having many Mattie moments. I keep coming back to one I wasn't even a part of but that stays with me. It's his art teacher remembering the day he painted his Mattie sun painting. Of course, the sun motif reminds me of RCC, and the way she describes his dancing, and his spirit, and then his knowing when it was "perfect, and done"...it's just the most beautiful vision, and sums him up. Though in my heart, he will ALWAYS be my "Mattie-moon."

The final message is from my mom. My mom wrote, "Can it be that a week has passed since we lost our dear Mattie? It is as though time has stood still even though the world has moved on to other things. Our hearts are broken in a way that can not be healed by the usual worldly solutions to our daily concerns. Perhaps with the passage of time we can someday come to grips with our great loss and turn it into a positive remembrance of all the beauty, love and happiness Mattie's life brought to each of us in the short time he was with us. Maybe that is why Mattie's smile lingers on forever in my heart, long after we said goodbye!"