Tonight's picture was taken in January of 2009. Julie, one of Mattie's fantastic babysitters (a former student of mine), came over to play with Mattie, so that Peter and I could take a break. Julie knew Mattie when he was healthy, so she had a history with him, which I think helped. Despite the major physical and emotional changes Mattie dealt with, he still related to Julie, and I was so happy about that. As you can see from this picture, Mattie most likely asked Julie to take a picture of both of them together. So Julie was holding the camera over their heads and snapped a picture. I always wonder how Mattie's babysitters feel about Mattie's death! After all, these university students were of a tender age themselves when they worked with Mattie, and I remember when I was in my 20's, I thought anything was possible. I had the wonderful ideals that come with youth, and a part of me wonders how Mattie's death impacts their world views.
Poem of the day: Bridging by Charlie Brown
It was fall and the leaves turned colors
But I did not notice
Then it was winter and the world turned white
I looked but did not see
Spring came and the flowers bloomed
I saw but my heart stayed cold
Summer comes, and yet
I cannot celebrate it without you
People work and play
The year progresses
Mother Nature paints her seasons
And yet, I am deep in the mourning colors of grief
Life goes on without me
I am not yet ready to join
A flow of events that make no sense
When you are not part of them
How does one "make meaning" when
The reason for meaning is gone.
I am constructing a bridge
Of words and deeds
That will link my past
To your present 8
Will you meet me halfway?
Peter and I had the wonderful opportunity to continue our interview from yesterday with Rick Rojas, a staff writer from the Washington Post. Rick is clearly interested in Mattie's/our story because he feels like we will give others a very realistic window into the world of pediatric cancer, the struggles, the battle, and how our lives have been transformed by Mattie's death. In a way, I am honored that Rick feels we are newsworthy and I continue to be impressed by his thoughtful questions and his ability to listen effectively. We met at a Starbuck's near Peter's office today, and we talked for about 90 minutes. In fact, if I did not have a lunch appointment, I most likely could have talked with Rick for hours. In a way, he felt bad that he had to bring up certain topics, but in all reality talking about Mattie and our struggles felt good (in fact, for me, it is therapeutic). Peter and I both answered Rick's questions, and at one point, Peter joked with Rick and I. Peter said to Rick, "do you notice how I answer the questions first, and then Vicki follows up?" Peter said, "this is Vicki's strategy, so while I am talking she is thinking, which is why her responses are so on target." Peter wasn't trying to say I was doing a better job than he was, because I wasn't, but he knows me well enough to know that when you ask me an emotionally laden question, I sometimes need time to process it and come up with a sound response. So I think one thing today's interview proved is that Peter and I are a good team, and we balance out each others statements. At the end of the interview, I told Peter that he is, and forgive the original Star Trek analogy, Captain Kirk and I am Dr. McCoy ("Bones"). Dr. McCoy was all about emotion and feelings and Captain Kirk was able to balance logic and reasoning with emotions. Peter got a kick out of this analogy as he was walking back to work.
Rick covered many topics with Peter and I. We talked about how our religious beliefs have changed once Mattie developed cancer and died. We talked about the impact of cancer on a marriage, we discussed the isolation of living with cancer, and how our priorities have been changed because of Mattie's death. In all reality, I told Rick that Mattie's death made me see that our materialistic priorities in this Country are very off base. That the real purpose to living is to connect with other people in a deep and meaningful way. It is through these connections that I believe true happiness can be achieved. Rick wanted to know how comfortable I have been about sharing our personal life on a blog for two years. I explained to him that I have NEVER kept a diary or a journal in my life, and before Mattie's cancer, I was a rather private person. I did tell him that writing the blog was easier when Mattie was alive, and my main purpose for writing back then was to keep Mattie's communities connected to him while he spent his days isolated in the hospital. However, my writing has changed with Mattie's death and in a way, it is harder and more painful to write each day. Sharing personal information on the blog is important to me because I feel this is my way of educating others about the grief process associated with a child's death, but I would be dishonest if I said that my honesty on the blog doesn't back fire on me, and cloud some people's viewpoints about what I am capable of. Naturally this deeply hurts me, and I wonder before others judge me, whether they could imagine how they would be handling their own child's death if this happened to them. I will keep you all posted about the article, but apparently the Post wants to take professional pictures of us to include with the article, so that may take a few weeks.
One thing CureSearch told Rick yesterday was that new cancer foundations sometimes start out with a bang, but then do not have the momentum to keep going and growing. Rick asked us how we felt about this. Peter explained why we are committed to the Mattie Miracle Cancer Foundation and I responded that I could understand CureSearch's viewpoint. When parents lose a child, they need to do something. Anything! So I imagine many new foundations get started out of this need. However, foundations are hard to maintain for various reasons. If the child with cancer is still living, the child could relapse and therefore it is impossible to run a foundation when a family is battling cancer. Or if a foundation is created because of the death of a child, it is possible that at some point, running the foundation may become too overwhelming and the need to separate from the world of cancer takes over. I told Rick, that for us the Foundation is a tangible extension of Mattie. We no longer have him in our lives to nurture, grow, and develop, so this passion and energy needs to be redirected. So I think the Foundation holds a very deep meaning for us. The Foundation is Mattie, and abandoning the Foundation in my mind is equivalent to abandoning Mattie's memory. We feel very fortunate to have met Rick, and hope to keep him posted on our Foundation's progress.
After the meeting, I drove out to Tyson's Corner for an interview lunch. I met with the Georgetown University Hospital Parent Advisory Board chair. Her name is Carrie. Carrie and I had a wonderful lunch together in which we chatted for two hours about our losses. Carrie did not lose her two children to cancer, but to another disease. Despite the differences in the deaths, we had a lot in common, and our lookouts on life are pretty similar. It was actually refreshing to hear someone else struggling with the same issues as I am. The irony is I found today's lunch much more meaningful than the support group I attended back in November of 2009. After we shared our stories, we then spoke about the parent advisory board and its mission and goals at the Hospital. I found out about an opening on the board at the Sean Swarner event we held at the hospital. A member of the board came up to me and asked whether I would consider being a part of the board. So I applied, and today was a follow up interview to my application. If the board votes me in, then I will begin working on this board in September. One of the roles I would be considered for would be to serve as the Family Centered Care Committee Chair. Below you will find the mission of the Advisory Board along with the vision of the Family Centered Care Committee.
The Georgetown University Hospital's (GUH) Pediatric Parent Advisory Board (PAB) was established in August of 2002 to provide family/professional collaboration and community support on issues of concern to hospitalized children and their families. PAB members represent a cross-section of parents of formerly and currently hospitalized pediatric patients as well as leading pediatric GUH physicians, nurses, and staff.
The vision of the Family Centered Care Committee is to educate staff and families on family centered care while improving the patient/parent feedback loop to GUH. All areas should be able to be analyzed and deemed action oriented.
Last night, I received a lovely e-mail from our friend, Mary. Mary's children went to the same preschool as Mattie. Mary's daughter, Abby, wrote about the Mattie Miracle walk in her kindergarten journal, and Mary wanted me to see it. I was very touched that this Walk should mean so much to Abby. What you need to understand is that Abby did not know Mattie very well, yet she and her sister, Emily, always refer to Mattie as their "friend."
and it is attached. It was an entry that mentioned that she was getting ready to go to Mattie's March on Sunday, May 23. She must have really been looking forward to going. In her picture, she drew herself, Gavin (Carolyn's son), Ellie (Carolyn's daugher), and Emily (her sister)."
Ann sent me a flyer today announcing a car wash and bake sale tomorrow in her driveway. The money raised from the bake sale is going directly to the Mattie Miracle Cancer Foundation. So if you are looking to get your car washed, and while waiting having a baked treat, come by and see us.
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CAR WASH!
Thursday June 24th from 4 to 6pm at The Henshaw Driveway
For the location and more information, contact Ann at rmh-amh@comcast.net
Come get your car sparkling clean while you enjoy home baked goods. There are two kinds of washes, the Basic and Deluxe.
Basic: $5
*Two washes and rinses
*Dry
Deluxe: $8
*Three washes and rinses
*Dry
*Tire cleaning
**Donations for baked goods are greatly appreciated and will be donated to Mattie Miracle Cancer Foundation.
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I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am exhausted just reading about what you accomplished yesterday. So many people to meet and speak with and the variety of responses to your stories and appeals. One has to wonder about the young staffer who appeared not to "get it" at all. Was she so young that she really did not have memories of 9/11 and no significant losses in her family? Or perhaps she is someone who has distanced herself from all of these kinds of discussions because of some personal pain? Sometimes it is hard to know what causes people to respond in what appears to be an inappropriate, uncaring way. I am glad that given her response, she is a "staffer" and not a representative and that she hasn't chosen to work in a caregiving profession. I love your mom's writing about the "blog of life". What she says is so true. So many have read it and now have a deeper appreciation of what they have in their lives. Many understand about letting the small things go and focusing on the important; the time with those we love. Remembering to say and show that love because we never know what will happen in our lives. When clients come in upset about something that seems very minor I often ask them if they will remember it tomorrow or next week? If the answer is "no" I ask why they are wasting their emotional energy on something that is clearly not really important to them. Your blog reminds us about that on a daily basis and does so in a very compelling way. I am glad that the day while exhausting was more productive than Monday was and I hope that Rick can help spread the word through the media about the importance of funding this critical cause. As I practice today, I send you my energy to help you continue to advocate for those who cannot speak for themselves. I hold you gently in my thoughts."
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