December 16, 2009

Wednesday, December 16, 2009

Tonight's picture was taken by my mom in December 2007. This was the last Christmas we spent with Mattie before he was diagnosed with cancer. Little did we know how lucky we were sitting by the tree that year. In 2007, we had no idea what Osteosarcoma was, much less how it could ravage a child and his family. If there is anything you can learn from Mattie's story this holiday season, it should be to appreciate your health and those around you. Nothing in life is guaranteed, and it is important to appreciate the time you have with your children during the moment. Because if you wait for the right time to connect, bond, do something special, that time may never come, and when it does, it could be too late.


Poem of the day: Mother and Child by Kelly Cummings

I was there.
I sat with you
the vigil through day
sand nights, pleading with heaven
that I might take your place.
Heaven did not want me,
but you, my beautiful boy.
I was there.
I held your still hand,
never to clasp mine again,
as it so often did
when you were small…
How is it then,that
I look for you in every crowd?
The breeze blows open my door,
I turn to see if you are there.
Footsteps approaching,
I raise my eyes
expecting to see you,
hands in pockets, all smiles.
Then I remember anew,
that heaven has taken you.
My boy, my boy,
that you could sing to me
just one more song.
That I could hold you
in my arms once again,
if only for a moment.
How is it that I see you
around every corner?
How is it that I hear your voice
upon the evening breeze?
That lovely gossamer thread,
that binds mother and child together,
That part of me that was you,
the part of you that was me,
Is still tightly woven together my son,
I hear you on the breeze
because you sing still, out of heaven.
That gossamer thread
will lead me home to you,
wait for me my darling boy.
I love you.

I spent part of the day with Ann today. We ran around doing chores together and chatting. Trying to work through Mattie's death is a full time endeavor for me, and because it is all consuming at times, I periodically forget that "my angel of hope," Ann, is also dealing with her own grief as well. After all, she lost her father five weeks after Mattie's death, and also lost her brother to cancer only two years ago. Perhaps this is one of the many reasons we understand each other so well. This morning, I had the opportunity to read an article about loneliness during the holiday season, published by the American Counseling Association. The article discussed the pervasive sense of isolation and loneliness many people feel during the holidays. The article reflected on the importance of "reviving a person’s hope" and through this revitalization one can gain a sense of worthiness to have joy and happiness back in life. In many ways, I consider myself fortunate to have Ann in my life, because she is doing just that, trying to revive my hope and spirit to live and reconnect with others, which is no easy task.

This evening Peter went to the PICU at Georgetown University Hospital to donate a printer to the Childlife playroom on behalf of Mattie's memory and our Foundation. I have yet to visit the PICU since Mattie's death, and I am not sure what that reunion will be like for me, but I do know that Peter had a hard time revisiting this space today. After all, how could he not? It is like visiting home, but the crucial part is missing, your child. Mattie breathed life into the PICU, and his energy was contagious. Somehow I imagine his presence is still there in spirit.

Peter designed lapel pins, in the shape of a ribbon. The ribbon pin is made out of metal and it is orange, which is one of Mattie's favorite colors. On one side of the ribbon it reads "Mattie Miracle" and on the other side of the ribbon loop it reads "MMCF." I was thrilled to see the shipment of pins arrive today, and have already put one on my coat. This evening, we had the wonderful opportunity to have dinner with Junko and Tad. Many of my faithful blog readers know that Junko is the SSSAS mom and friend who would come to visit me in the PICU, and bring me a wonderful lunch and then give me a massage. Both Junko and Tad spoiled us this year and when Tad arrived at dinner tonight and he was wearing a beautiful red tie that read, "Realize a Mattie Miracle." Tad gave Peter the same tie at Mattie's celebration of life reception. It was a special gift to receive this tie on October 10, 2009, and it was even more special to see Tad wearing his tie tonight to dinner. We should never forget why we created the Foundation, and the tie sums it up perfectly.... we all want to "realize a Mattie Miracle" so that no other child or family has to live this nightmare.


Both Tad and Peter grew up in Massachusetts. So I kidded them, or picked on them for their love and admiration of the Boston Red Sox. Frankly understanding the loyalty, commitment, and passion of a Red Sox fan could be a fantastic case study. I have never seen such devotion, and as soon as one Red Sox fan spots another fan, there seems to be an instant connection and bonding. Amazing! Any case, while teasing Peter, I observed him laughing. I commented to him after dinner, while walking home, that there was something about his laugh tonight, or his facial expression that reminded me of when I met him back in college. Needless to say, it was nice to see him smile. Junko and Tad's friendships are another gift that Mattie gave to us, and it was lovely to get together midweek and go out to dinner. Something we would rarely, if ever, do prior to Mattie's cancer.

Peter and I commented to each other that we actually have a social calendar now. We went out to dinner last night with Kristen, Mattie's doctor, and tonight with our friends. I can't remember that last time I went out to dinner during the work week. Through Mattie's death, I am learning to stop and slow down, and to appreciate what really matters in life. Connections with others.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I can only imagine how difficult it must be to open a card and see wishes for a Merry Christmas and/or a Happy New Year to you, Peter and Mattie. And then to have to decide how to deal with telling people that Mattie is no longer here with us. What a heartrending task to have in front of you. Although it makes it less personal, perhaps typing up what you want to tell people and then printing it off to put into a note card (not a Christmas card) might be a possible way to do this. I ended up doing something like this when I was contacted by distant relatives and friends of my mother's when she died. Although we did our best to let people know, we missed quite a few and they sent cards to her at Rosh Hashana (Jewish New Year) that I felt required a response. I am sure that you can get other suggestions if this one doesn't suit your needs. Just know that I am holding you gently in my heart as you work your way through this season."