Wednesday, November 25, 2009

Wednesday, November 25, 2009

Tonight's picture was taken last year on Thanksgiving Day. Mattie's school counselor gave him this adorable turkey hat, and frankly when he put it on his head, I thought to myself, there couldn't be a cuter turkey around! As our readers head into Thanksgiving, I wanted to share with you this cute picture and let you know that despite our uncertainty to celebrate holidays, we do want to let you all know how thankful and grateful we are for your continued support. If you do nothing else tomorrow on Thanksgiving, please give thanks for the simpler and more important things in life such as your health and being together with your family. With those two things, anything else is possible!

Poem of the day: A TOUCH OF HEAVEN by Laurie J. Crist

Softly, softly, angels' wings...
Songs of God the cherub sings.
Where peace is like a faded quilt
And love the squares so beautifully built
Wrapped `round each soul who there resides
To warm the hearts where He abides.
So sweet the sound of angel voices,
Hearing them the heart rejoices.
Strain your ears and you might hear it -
Sweet sound that speaks unto your spirit.
Now let your eyes follow the source of that sound;
You will find them drawn heaven-bound.
Look closely now, past clouds and sky.
See God's Kingdom above us high?
Now see the angels, see their faces
Aglow as they bask in the good Lord's graces.
One of these is my son so dear.
He went away; he left us here.
And now my dreams take me to a place
Where souls live on in love and grace.
And I know for all sweet eternity
My son dwells in love and serenity.



My day began in a rather emotional way. When I woke up I went downstairs and sat at our dining room table. While I was sitting there, I was surrounded (as I normally am) by pictures of Mattie. In the past, I may have jumped up or around to avoid what this confrontation would produce, but today I just sat there. As I was sitting there, I began to cry. However, the crying continued for an hour or so. It was almost as if I was reliving our time together, I literally could picture Mattie in the living room, on our rug, building a Lego set, and his determination and his persistence with the process. It seemed all so real as if I had a video tape in my mind that was playing back an all too familiar scene. In addition, throughout the morning, I could hear Mattie's chimes outside twinkling with the wind, as if to signal me, and to let me know he is watching me, and is with me. In those moments, no matter where I am, I do answer the chimes. I tell Mattie that I am listening, I love him, and I miss him too. Needless to say, I love those chimes.

It was a very emotional hour, and during that time, I happened to text message Peter, who could sense I was having a rough start to the day. He validated my feelings and I felt even through our phones we understood each other and the pain. It doesn't take the pain away, but it does help to know that you are not alone in how you are feeling. That someone else can relate to what you are feeling deeply. The crying did not help my headache for sure, and the only reason I pulled myself together was because I promised Ann I would cook something for Thanksgiving tomorrow to bring to her house. Cooking reset my mental state for a brief time period.

Somewhere along the line this morning Ann called me, as she usually does to check in and to make sure I am not balled up somewhere in the corner of a room. It is ironic, that Ann was our Team Mattie coordinator, and despite Mattie being gone, she is still there with me each and every day, no matter how good or bad the day is. I always tell Ann that Mattie wasn't leaving me until he knew there was someone out there with his energy that could be there for Peter and I. Mattie was a good judge of character, and I am grateful that he connected me with Ann.

It is hard to believe that tomorrow is Thanksgiving, and it will be our first major holiday without Mattie. I remember our Thanksgiving last year together, which wasn't a pleasant memory either. The only positive moment that day, was when we watched the Macy's day parade, but after that, the rest of the day Mattie was upset, moody, and did not want to eat or smell food. Nor did he want the rest of us to eat. He also did not want us to talk or make noise. At the time it was frustrating and upsetting, now of course I can put his behavior and feelings into context. He was miserable, feeling miserable, and under the circumstances, I most likely would have behaved the same way or worse. I know tomorrow is a holiday, but it doesn't feel like a holiday to me. In fact it is hard to feel like celebrating anything when a piece of your heart feels like it has been removed.

I visited Sammie's website today (many of you remember Sammie, she lived in California and died in October from Osteosarcoma). Sammie's mom, Chris, expressed how she was feeling in today's posting, and it seems like Chris and I could literally be talking about each other. We both feel physically weak, like we are dragging the weight of the world on our shoulders, and are not energetic to do most activities in our lives. Which brings me back to my statement last night, grief has a very real physical component to it. In addition to dealing with grief, we are also dealing with months on end of living through trauma and in a PICU environment. The combination of these things together creates an aftermath with very real physical consequences. So I wonder why I feel physically poor and have intense headaches, I don't need to look much further than my life's circumstances.

Tonight, we were invited by Goli, our former neighbor who moved to NYC, to visit her at her friend's home in Virginia. It was lovely to reconnect with Goli. Mattie was very fond of Goli, and Mattie also loved Goli's cats. Goli had the only cats I know who could be walked on a leash. When Mattie was well, he would eagerly await to see Goli from his bedroom window walking the cats outside. As soon as he would see her, he would alert me, and then wanted to go out to join her. When Goli moved to New York, this was a loss for Mattie, and he desperately tried to understand why she would want to leave him behind. Got to love the mind of a six year old. While Mattie received treatment twice at Sloan Kettering in New York, he visited with Goli and her husband, John. Mattie enjoyed those visits greatly.

We had a nice time at dinner tonight, and enjoyed getting to know Goli's friend, Susie better. Susie was a delightful host and we had the pleasure of meeting her son, who is applying to colleges now. I always imagined Mattie going to college. So tonight's discussion about schools was hard because this is no longer a part of our future. Just another thing in a long list of things Peter and I have been forced to come to terms with.


I would like to end tonight's posting with three messages. The first message is from my friend, Charlie. Charlie wrote, "First, thank you for posting Peter's "Remembrances" from the November 8 memorial service at Georgetown. It was absolutely beautiful and brought tears to my eyes. I especially appreciated the thoughts about the challenges of being a dad and Mattie's tight bonding to you which we all saw for ourselves during his battle this past year. Who could imagine when this started that you would be without him this holiday season? I will share something from the Haven newsletter that just arrived in my mailbox...when I read it, I said, this is just what Vicki wrote too! "One of the startling relevations we often experience following the death of a loved one is the inexplicable manner in which the world continues to revolve-as if this catastrophic event had not occurred-and it is never more evident than during the holiday season." wrote Judi Taibl. "This is the time to honor your needs....formulate a plan: determine which occasions will have meaning for you this year and respectfully decline others." I think this is so true. Some events may make sense to you and be worth trying while others may just be too much. Do what suits your heart.I hold you gently in my thoughts as I think about lighting a candle in the dark of this season."

The second message is from my sister-in-law, Lisa. Lisa wrote, "Just want to send along our love and best wishes. In conversations with Pete and through the blog, Vicki, you two continue to teach and amaze us with your capacity to share and be honest about pain and loss. So brave to do because so many of us run from those two realities. So many people feel profound loss but hide it for many reasons; I'm so grateful to you both for allowing us to be a part of it. So many ideas and statements in the blog resonate, and yet it feels silly to say "Hey, I'm feeling that, too" or "I was wondering about that." Readers can feel and wonder, but probably from the privilege of a different place. And as Pete's words from the Nov 8 service tell us, and Vicki, as you often remind us, it's all so fleeting and frightening that we must embrace the love and little moments whenever we can. I can't imagine how you're facing the next month; on the one hand, could it possibly be any harder than these past few months? on the other hand... Please know, though, we love you and miss you and wish you some peace on Thanksgiving. At church on Sunday we all thought about gratitude as a concept, and how could I imagine being grateful for anything other than the people who've touched our lives? Mattie embodied love and joy and hope and humor, and I'm grateful he brought those to us. Not for long enough, though."


The third message is from my colleague and friend, Denise. Denise wrote, "I began this morning as I do every morning reading the blog and asking God to support you and Peter and to provide strength to both of you as you go through the day. I read the posting from your former student who asked if you were thinking about returning to teaching. I received an email from Carrie asking if I would come in to do a guest lecture in the spring for her class. I remembered back to when you asked me to come and lecture to your class. I was honored and excited that you asked me to do that and I enjoyed the opportunity to spend that brief time with you. Each time I came, I observed how you interacted with the students and how much they valued you as their professor. Seeing those interactions made me work harder to deliver a lecture that was useful and meaningful to them. You have touched many lives and continue to do so as you write the blog and so generously share your journey with others. Each day, I and many others hold you in our hearts and thoughts. Be gentle and generous to yourself."