Saturday, September 19, 2009

Saturday, September 19, 2009

I am sharing one of my favorite pictures of Mattie with you tonight. Mattie loved his walker, particularly because it gave him independence to move around. I also loved him in his puppy hat and jacket. I miss this cutie.

Poem of the day (Thank you Grant! Grant is Peter's boss at Voxiva.) by Canon Henry Scott-Holland

Death is nothing at all
I have only slipped away into the next room
I am I and you are you
Whatever we were to each other
That we are still
Call me by my old familiar name
Speak to me in the easy way you always used
Put no difference into your tone
Wear no forced air of solemnity or sorrow
Laugh as we always laughed
At the little jokes we always enjoyed together
Play, smile, think of me, pray for me
Let my name be ever the household word that it always was
Let it be spoken without effort
Without the ghost of a shadow in it
Life means all that it ever meant
It is the same as it ever was
There is absolute unbroken continuity
What is death but a negligible accident?
Why should I be out of mind
Because I am out of sight?
I am waiting for you for an interval
Somewhere very near
Just around the corner
All is well.
Nothing is past; nothing is lost
One brief moment and all will be as it was before
How we shall laugh at the trouble of parting when we meet again!

Today was a day of great reflection. Peter and I went out to lunch together, and sat by the Potomac River. We love the water and looking at boats, and I just get a kick out of watching people. Mattie was a lot like me in this regard, and we both enjoyed observing and assessing those around us. Mattie also loved boats, as many of you know, his one wish this year was to be a captain of a boat. But naturally toward the end of his fight with cancer, even this one wish and dream faded away. He no longer was interested in boats, in all reality nothing worldly interested him anymore.

It is times where the reality of Mattie's death just hits me. When Peter and I walked along the Potomac River today, I saw many children out with their parents. Seeing children, especially little boys, is very hard for me. I will never have the pleasure of seeing Mattie grow up and to enjoy the many ups and downs associated with parenting. In all reality, I find that I have been robbed and short changed of a very vital and enriching part of life. This provides me with an internal pain that is not only immeasurable, but it is so pervasive at times that it makes me feel emotionally empty and disconnected with the world.

Peter and I had a nice lunch together, where we talked about all sorts of things, but naturally we talked about Mattie and his experiences at Georgetown. I will forever be grateful to the nurses, doctors, Linda, Jenny, Jessie, and Jey at Georgetown Hospital. Mattie's HEM/ONC nurses became our family, and in a way by losing Mattie, we also lost the support network, and the beautiful people that surrounded us each day. They loved Mattie and they loved us, and I am forever changed by my interactions with this fine people.

One of the issues I am working through is seeing Mattie die. This five hour ordeal until death is very vivid to me, and the "death rattle" sound that came from Mattie's lungs remains a part of me. I am trying to come to peace with everything I observed and lived through, but it is hard to accept 13 months of this torture. In the midst of these horrible visions of death, I also am surrounded by the beauty of Mattie's face, the sound of his voice, his huge capacity to love others and make us laugh. I know as time passes this is supposed to become easier, that I am supposed to come to peace with what has happened, and be able to accept Mattie's death. My reaction to all of this is NO. I will never be able to come to peace with Mattie's death, I certainly accept it, I have no choice, but being able to move on peacefully seems down right impossible. On September 8, I lost Mattie and it feels as if a vital part of myself also died. There are times during the day that I physically know I am in motion and doing things, but my heart and soul are not going along for the ride. They have been parked somewhere else, and haven't caught up with my body.

Peter and I went to visit Ann and her parents today. I had some questions and concerns about Sully, Ann's dad, as it related to his medication management and the trajectory of his decline. I wanted to support Ann in some way, and therefore e-mailed one of my angels. I e-mailed Debbi, Mattie's sedation nurse angel. Though Debbi specializes in pediatric sedation, I highly value her input and assessment of situations. She advocated and guided me correctly 100% of the time with Mattie. In fact, Debbi and Tricia (one of Mattie's outstanding HEM/ONC nurses) are the ones who broke it to me that Mattie did not have long to live. I felt it was vital to get the perspective of someone I trust and respect to share her thoughts on Sully's care and medication management. Debbi came tonight to visit with us as a friend. Debbi sat with us, watched Sully, interacted with Ann's mom, and helped advocate with us as we were talking with one of the Hospice nurses. One thing I have quickly concluded after watching Hospice in action, is that for Mattie's situation, I am SO thrilled we elected to go through palliative care at Georgetown Hospital. I could never have dealt with Hospice, and after seeing what Ann is contending with, I would have been devastated and upset if we made this transition. Debbi had dinner with us and was a true friend tonight. Thank you Debbi for supporting me and Ann. I will not forget this, nor will I forget what you did for Mattie ever. I also want to thank Tanja (a fellow SSSAS parent and friend) for watching Sully tonight, while we all had dinner together and chatted outside Sully's room. Eating, talking, and reflecting are very therapeutic and healing for me. These are all things in a way I need to relearn to do. I have not eaten peacefully in over a year, and at times am still turned off to food and eating. In addition, we have been denied the opportunity to talk with others for months, so being able to talk, laugh, and express one's self is very needed to process our feelings about Mattie.

In the midst of helping Sully, we also talked and reflected on the life and spirit of Mattie. Debbi told me that Mattie is greatly missed at Georgetown, and I was truly touched to hear this. A part of me was concerned about how I was going to react to being reunited with Debbi today. At first seeing her brought tears to my eyes, but in essence these were good tears. Because my emotions were about our love for Debbi, and the incredible support and care she gave Mattie.

We want to thank the Cavanaugh family for dinner tonight. We truly value your continued support! I am signing off for the night, since it is almost 3am, and somehow need to shut down for the day. Thank you for reading Mattie's blog and your willingness to walk this very difficult journey with us!