Tuesday, June 22, 2010 -- Mattie died 40 weeks ago today.
Tonight's picture was taken in August of 2009, a month before Mattie died. I did not know if I was coming or going back then. The intense stress of Mattie's prognosis was unthinkable and hard to come to terms with. Peter must have snapped this picture, as I was trying to rest, and Mattie was snuggled up against me. Behind us, was our life line...... the call button to our amazing HEM/ONC nurses. I will never forget that red button! As I was selecting this photo for the blog, I had a tinge of regret when I saw it. I regretted that I closed my eyes for a minute, rather than spending it more engaged with Mattie. I now have a lifetime to rest, but only had a finite amount of time with Mattie. When I happened to text message Ann about this today, she responded with a reality check. I normally don't quote Ann, since many of our conversations are between us, but her response was, "Good God you were amazing and took almost zero breaks from him, you pushed yourself beyond belief and should have no regrets." Though on some level I know this, I do need reassurance and validation at times, and in those moments my Angel of Hope is always there for me. As I focus upon time tonight, I have attached a link to a song, by Clint Black entitled, Spend my time, that is very meaningful to me.
http://www.youtube.com/watch?v=WXbZ7YpYceM
Poem of the day:
While Life Goes On by Brenda Penepent
A drop of dew on the rose
Outside my window
Greets my morning eyes
With a promise of new beginnings.
Sunlight softly steals a path
Along the floor of my kitchen;
Reminding me that time will pass,
With or without me.
Animals awaken from slumbers
And busy themselves with the day.
People in cars pass by
While life goes on.
This poem,
While life goes on, captures the feelings and thoughts of someone experiencing grief. I know I am always amazed to think that my world has changed dramatically, and yet as I observe others around me, life moves on as usual. Cars pass by, people head to work, children enter school and go on vacation, and the list goes on. As today marks the 40th week of Mattie's passing, I can't help but reflect upon the time passing by. It is just that, it is only time. The feelings, thoughts, and memories of Mattie are alive and well in my heart and mind, and no amount of time will erase the horror Peter and I lived through.
Unlike yesterday, today was a very empowering day. Maybe because if I was born to do something, then today I had a glimpse as to what that actually was.... which is to advocate for those who can't do it for themselves. I naturally do this, which is probably why I became a mental health counselor, but my role and experiences have evolved thanks to the lessons I learned from my best teacher, Mattie. Living in Washington, DC and being involved in many professional counseling associations, I have had numerous advocacy training opportunities and visits to Capitol Hill to educate and advocate for the counseling profession and the clients we serve. I am thankful to the American Counseling Association and the American Mental Health Counselors Association, who taught me so well. Thanks to these organizations I am very comfortable lobbying on mental health related issues, but I never had to speak about something very personal and close to home for me, such as childhood cancer.
Peter and I attended a CureSearch rally this morning. At the rally I met some wonderful and dedicated individuals in the world of pediatric cancer. We want to thank Cynthia Duncan, the executive director of Hope Street Kids (a private foundation started by Congresswoman Deborah Pryce, in honor of her daughter Caroline who died from Neuroblastoma) for inviting us to this Reach the Day event, and for personally helping us schedule our visits on the Hill today. I had the distinct honor of meeting Congresswoman Pryce today. Peter met her last year, but I never had the pleasure. Deborah and I immediately connected, most likely because we share something VERY important in common. We lost our only child to cancer. We cried together in the middle of a park, and we both discussed how our lives are profoundly changed. Deborah talked about how childhood cancer destroys marriages and I told her I could see that happening easily, especially since no two people respond to grief in the same way, and therefore this can provide great stress on a married couple. I enjoyed meeting Deborah, I admire the outstanding work Hope Street Kids has done and continues to do, and I find the fact that grieving parents talk the same language very comforting.
Before I share some pictures with you from our day's event, I also want to mention that Rick Rojas, a staff writer for the
Washington Post, was with Peter and I the whole day. Rick did an article on Mattie last year, and is no stranger to our story, after all he too is a blog reader. Rick was a trooper today, because we were out in the hot sun for the rally and then walked from one congressional office to another. Anyone who has been on Capitol Hill knows that you can get great exercise just walking from one congressional office to the next. Some offices are in different buildings, and no matter how often I visit the Hill, I always get lost. Once inside, each floor and corridor looks exactly the same to me. Fortunately I had Peter with me, so I paid no attention to where we were going, but instead had the opportunity to talk to other parents and Rick who were trailing around with us.
I found Rick's observations and questions very meaningful. Rick first interviewed Peter and I in the park where the rally was, and one of his questions was how did I survive the ordeal of Mattie's cancer diagnosis and death? My most immediate response, and it is true, was the incredible support of Team Mattie. I explained to him for over a year, I NEVER had to cook a meal, I NEVER had to buy a toy, and I always had someone to talk to. I told him that I have to find meaning in Mattie's death, and knowing that people read the blog each day makes me feel as if my message is being at least read and perhaps internalized by others. I want to think that our profound loss is a life lesson for others, and that we are making a difference. Rick watched us go from one congressional visit to another. We did four visits in total for today, which may not sound like a lot, especially when I consider that I have done maybe 8 visits in one day with counseling organizations, but FOUR was A LOT! It was a lot because of the content we were talking about. We all shared our stories of childhood cancer with the staffers we met, and some of the stories brought me to tears, and I cried right in the middle of a meeting at Senator Mikulski's office. Peter and I visited the following offices today: 1) Senator Mark Warner (D-VA), 2) Senator Barbara Mikulski (D-MD), 3) Rep. Chris Van Hollen (D-MD) --- We actually met him and took a picture with him!, and 4) Rep. Joe Sestak (D-PA).
Rick could clearly see that each time our group came out of a staffer meeting, our reactions were different. Some of the staffers were more receptive to the issues we were discussing than others, naturally, that is human nature. But one staffer shocked me completely. She heard us share very emotional stories about our children, and her affect remained FLAT throughout each story. Two of the moms we were with had issues with the staffer's demeanor, and began to assert themselves even more. I understood their frustration, but I think their style only further distanced our case with this staffer. One of these moms told the staffer that she did not feel as if this young individual understood or could relate to what we were telling her. In fact, this mom asked her to take a step back and asked her to remember where she was on September 11, 2001. The staffer said she COULDN'T remember. Shocking as that sounds! The mom then asked her if she knew how many people died during 9/11. Again the staffer had NO idea! So we educated her, but here is the connection that the mom was trying to make. She asked the staffer whether the Senator would try everything in her power to prevent another 9/11 attack? Thankfully the staffer answered, yes. She got that answer correct. The mom then said, that in 9/11 around 3000 people died, however, each year around 3000 children die from cancer. So unlike 9/11, which thankfully was an isolated attack, cancer is here to stay, and she wanted to know what legislation the Senator supported that would look out for the well being of our children with cancer. It actually was a great analogy, and I am not expressing it as well as it was delivered. However, in great disappointment the staffer did not know how to answer our question, and in all reality, she made it seem like the welfare of our children is not her Senator's priority. The whole interaction was down right shocking, and if I were this Senator, I would be embarrassed by the way this staffer represented the office.
Rick was able to see the frustration on our faces, as well as hear the screaming through the conference room door while we were meeting with this particular staffer. So therefore, when the meeting was over, he asked us all some questions. He wasn't allowed in the meetings with us, because many of the offices refuse to allow media in unless their communication's person sits in on the meeting. Rick asked us to compare our meetings in Senator Warner's office versus Senator Mikulski's office, and clearly we had a night and day experience. What I appreciated about Rick, is not only was he covering our story, but he was really participating in the process with us. He helped us talk through our feelings and I appreciated his thoughtful questions.
The two champions in today's visit were the offices of Rep. Sestak and Rep. Van Hollen. Both of these individuals are HIGHLY supportive of pediatric cancer issues, realize much more funding is needed, and their staffers are not only empathetic, but proactive, and very responsive. In fact, Rep. Van Hollen actually attended part of the meeting we had, and he was not only supportive of our mission on the Hill, but was gracious with his time. Ironically, Rep. Sestak's office and Rep. Van Hollen's office were the only two offices that acknowledged our immense loss and the courage to come speak about it only 9 months after Mattie's death. Their sensitivity caught my attention, because I know the tight time lines they work under in a given day. Peter and I are excited about the opportunity to continue to work with Rep. Sestak's office, with the upcoming Pediatric Cancer Caucus meeting in September.
As we said our good-bye's to Rick today, he asked us whether we would meet with him tomorrow. He wants to continue the interview and hear more about Mattie's amazing story. I was actually honored by this invitation, because CureSearch told us that Rick was going to profile four families from today, but in essence that did not happen. I do think Mattie's story is compelling, and I feel honored to be able to tell it.
As my mother says in her posting tonight, the blog is "a bridge of words that connects others more fully to Mattie’s life and its significance and not just to his death."
Here are some pictures I took from today's event!!!!!!
Former Congresswoman Deborah Pryce (R-OH), who also established the Hope Street Kids Foundation, delivered an empowering message to parents today at the rally.
The next speaker at the rally was Dr. Peter C. Adamson. Peter is a pediatric oncologist and leading scientist at The Children’s Hospital of Philadelphia Research Institute, has been selected to lead the Children’s Oncology Group (COG) in its efforts to find cures for children with cancer. We had a meaningful conversation with Peter today, and he agreed with us that the treatment for osteosarcoma is still barbaric (when you think of the limb salvaging surgeries that are involved). Peter was very familiar with all of Mattie's doctors, especially Dr. Shad and Dr. Henshaw.
The next speaker was Adam Axler who is the Health Legislative Assistant in Joe Sestak's office (D-PA). We met with Adam later in the afternoon, but he delivered a powerful message of support in the morning.
Peter and I in front of Senator Barbara Mikulski's (D-MD) office. Two other moms joined our group.
Peter and I pictured with Rep. Chris Van Hollen (D-MD). Also during that meeting, we had the pleasure of talking with Ray Thorn, Legislative Assistant.
My mom wrote to me today and the title of her message was "The blog of life." It is a very powerful message and I told her when I read it, I cried. It makes me feel as if Peter and I are making a difference, and somehow hearing this message from my mom made a big impact of me. I hope you find the message just as meaningful.
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The Blog of Life by Virginia R. Sardi
An old Yiddish tale that has always stuck in my mind tells the story about a group of people sitting around a table privately lamenting their troubles when one of them suggests that they each put their troubles upon the table so that they might exchange them for someone else’s. In the end, each of them decides to take back his problems because the others on the table appear to be far worse than any of their own. You, in openly discussing the inner turmoil an illness like Mattie’s can cause a family, have given others a new perspective on their own lives. The Blog of Life taught them that they like the people sitting at the table would gladly take back their own troubles when they realized the enormity of having a child with a terminal illness. Despite the worries and concerns that confront people in the modern world, your blog has given many a yardstick by which to judge the normalcy of their own lives and an opportunity to appreciate their blessings of good health and abundance, often taken for granted. You have given your readers a much needed reality check which in the electronic age of sound bites and video images gets lost in the daily rat race to stay ahead of the curve. Through revealing your own heartaches in the blog, you have awakened your readers to the uncertainties inherent in life that is a sober message to them to get their priorities right given that the future they envision may never come. It is a great gift to your readers because it opens their eyes to the possibilities they may have overlooked to reinforce or create bonds of love and respect with those closest to them that are the building blocks of good future relationships as the family evolves and children become independent adults. By setting a wonderful example of parental devotion in tough times, you illustrate that the role of a parent is a sacred responsibility and that the opportunity to parent wisely is a function of quality time that is both finite and precious and should be a top priority in a successful life!
I refer to your blog as the Blog of Life because even though it was motivated by Mattie’s illness and death, you have written it with spirit and love as a detailed testament to Mattie’s character and your bond with him. It’s a bridge of words that connects others more fully to Mattie’s life and its significance and not just to his death. It is a thoughtful celebration of his life in words and pictures. In your daily postings of pictures and the recounting of treasured remembrances, you make his passion for life very real for your readers so they can better understand the heart and soul of what made Mattie the special unforgettable child that he was. Through the Mattie Miracle Cancer foundation, an expression of your deep commitment to his memory, Mattie’s determination to live will be remembered by your efforts to help other children stricken with cancer to increase their odds of being cured, a goal that Mattie would wholeheartedly endorse! If you sometimes wonder what keeps people coming back to read your story about what happened to Mattie, you and Peter, it is really very simple. It is a story about the depths of despair, the agony of loss, the soaring of the human spirit in times of trouble and the love that bound two devoted parents to their precious child in life and beyond. You inspire others by the depth of your compassion for the sick and lonely and by your observations about life and love, to always stay in touch with their better angels!
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I would like to end tonight's posting with two messages. The first message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "I wish I knew the right words to say as I type you these messages each Tuesday.... I can only say I admire you more and more each day for your advocacy and tenacity and your true love of Mattie. Thinking of you this Tuesday and every day."
The second message is from my friend, Charlie. Charlie wrote, "Thank you for sharing the information about CureSearch. Yesterday had to be an incredibly challenging day for you. As you said, surrounded by parents whose children survived while Mattie did not. And also to be "confronted" by the physical presence of many of those children. I am surprised you made it through the day. I know I would be thinking if the funding had happened as promised, would there have been more options out there when this disease struck Mattie and how many more children will be in the same situation with few or no options because the funding isn't there to do the research. Keep us all posted on the progress and let us know if the Post writes any more about the foundation and/or your and Peter's story. As I practice today I will be thinking of you and sending you the serenity I gain to help you keep in balance as you meet your challenges on the second day of this event. I hold you gently in my thoughts."
