Wednesday, January 20, 2010

Wednesday, January 20, 2010

Tonight's picture was also sent to me by Susan, a staff member at Mattie's school. It was taken during the lower school's field day in 2008. Mattie is the boy with the green sweater, on the right hand side of the picture. I am so happy Mattie's school sent me these wonderful photographs which document the happy and fun times he had, these are memories that I will cherish.

Poem of the day: Roller Coaster by Charlie Brown

The roller coaster I rode

With cancer as my co-pilot

Has been replaced by grief

And the ups and downs continue

I alternate between

Intense response to crisis

Or else I am unable to respond

And in intense shutdown

I am searching for a place

Of calm, of serenity

Where I can find the space

To breathe, to think, to focus

Perhaps that time will come

When the path becomes level

And grief only the occasional companion

But that time is not yet

Until then my friends

Bear with me and help me

Stay the rocky course

To a place of hope and healing

My friend, Charlie, wrote tonight's poem. "Roller coaster," reflects how I feel on any given day since cancer has entered my life. Mattie's cancer has deeply affected the person I am, it clouds how I view and feel about myself. Not to mention my outlook on the future. As the poem mentions, I am desperately looking for a place of calm and serenity. This may not be an external place or space per se, but instead, I would love a day of internal serenity, rather than the inner turmoil I swim through just to function on a daily basis.

I had the opportunity to visit two nursing homes today with Ann. As some of my readers may know, I have a deep care and concern for the older adult population in our society, along with their family caregivers. This affection may be the direct result of growing up with my maternal grandmother, who lived with my parents and I. My grandmother was like a second mother to me, and we spent a great deal of time together. She was a special, charming, and loving individual, who I am quite sure did not have a mean bone in her body. Walking into the nursing homes today, reminded me of the day my mom placed my grandmother in a nursing home. This was a very difficult decision for my mom, but my grandmother had suffered a massive stroke, which left her partially paralyzed, unable to swallow, read, and with a change in personality. Though my mom cared for my ill grandmother at home for over a year, my mom became very sick and was hospitalized as a result of her intense caregiving role. Therefore, my mom was unable to care for my grandmother at home. Checking my grandmother into a nursing home with my mom, was another hard thing to witness in my life. I remember so many emotions that day, and landed up yelling at the nursing home administrator.

Walking into a nursing home is another reality check that everyone should have in life. In fact, if I was an educator of young children, I would make visits to nursing homes a mandatory part of the curriculum. Children have a way of breathing life into these drab and lonely facilities. As you enter most nursing homes, you usually will find some residents at the door, who are desperately looking for love and attention from an outsider. Typically many of these wonderful individuals are forgotten by their loved ones and society as a whole. As I work with older adults, I always try to imagine what they must have been like when they were younger, I imagine the experiences they must have had, and what they have seen in their lifetime. But the humbling part about visiting a nursing home, is that I can't help but reflect that..... there by the GRACE OF GOD GO I.

This evening, I had the opportunity to visit with Mary and Mike (the friend I was telling you about who has been ill). We had dinner together and our conversations are always lively. Mary and Mike were valuable members of Team Mattie, and they are another fine example of the friendships we have cultivated thanks to our special seven year old. After dinner their girls were playing on the computer, and they went to one of Mattie's favorite websites to play a game. I remember these games, the sounds of the website, and the characters in the games, as if I played these games yesterday. As a parent, your interests become the interests of your children. You watch their TV shows, play their games, cook their favorite foods, read their books, and the list goes on. However, on September 8, 2009, the interests that I cultivated for 7 years also died. In a way, it leaves me floundering now, as I struggle to reinvent or find myself somehow. Certainly hearing and seeing the girls playing on the computer tonight could have made me sad, but instead, the opposite happened. It reminded me of all the computer time Mattie and I had with each other. It reminded me of his laughter, his inquisitiveness, and his desire to sit on my lap and have me right next to him as he played.
 
I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "You have become accustomed to living with adrenaline and cortisol at levels none of us live with around the clock. That changes your body and makes it less sensitive to outside stimuli unless that stimulus is intense. It takes time for the body to understand that it is no longer living in crisis mode, that pumping hormones to push up blood pressure, speed up response time and all the other things that go with response to threats are no longer needed. When you are not intensely focused you feel "flat" because it feels strange without the high levels of stress hormones. This is a normal reaction for anyone who has been through a long term crisis whether it is a prolonged illness or a physical threat that lasts a long time. Perhaps it would be helpful to "retrain" your body through yoga or relaxation exercises just as you are starting to retrain your focus with reading for the book club. I will tell you as a former medical person that although the nurses become attached to all their patients to some degree, there are always a few who really capture your heart. It was very clear that Mattie was one of those for the nurses and staff at Georgetown. You and Peter won a place in their hearts as well for your devoted care to Mattie and your willingness to connect to the staff as well. Although you wrote that you learned from Mattie's illness and death the true meaning of love, we would all have spared you this lesson if we could have. I wish you as always some space in which to breathe, reflect and just be. I hold you gently in my thoughts."