Tonight's picture was taken in June of 2009. Mattie was visiting his "girlfriend," Charlotte. Charlotte's mom, Ellen, invited all three of us to her house for dinner. That particular night Mattie actually ate, which was a rarity! We were sitting outside, and the kids were having a good time playing and eating together. It was a very memorable evening. As it became time to leave Charlotte's house that evening, Mattie and Charlotte started to chase each other around the first floor. Now mind you Mattie did not walk at all, but somehow he found a way to hobble around and be playful. It was that night, I saw my seven year old be transformed into "the kissing bandit." Literally he and Charlotte joked about kissing each other, and finally they stopped the chasing game and actually kissed each other. I was in total shock, and naturally the more shocked I was the more they wanted to repeat the action. As I look back at that night, I of course smile because of the happiness Mattie felt, and I also realize that to some extent Mattie died knowing what it felt like to be loved by a girl (other than myself of course!). When Mattie was healthy he talked about marrying Charlotte all the time. He even gave her an engagement ring which he won at his dentist check up, and I assure you watching Mattie give the ring to Charlotte was a SIGHT! When you look at this picture though, to me Mattie looks healthy. He looks happy and he looks like he was given another chance at life. As I have learned though, pictures can be deceiving!
Quote of the day: Only the person who is incapable of love is entirely free of the possibility of grief. In the words of a dying man: "The agony is great and yet I will stand it. Had I not loved so very much, but goodness knows I would not want to diminish that precious love by one fraction. I will hurt and I will be grateful for it. For it bears witness to the depth of our meanings and for that I will be eternally grateful." ~ Scotty, a hospice chaplain
Today was another challenging day. I spent the entire day at home. I felt very tired, run down, and really unable to muster the energy to do much. I did try to spend the morning doing literature searches for our Foundation work. I want to learn as much as I can about the psychosocial risks present in families whose child has been diagnosed with cancer. I also want to know what interventions are provided in a hospital setting to address these risks, and how the effectiveness of these services offered have been measured. As is NO surprise to me, there isn't much research in this entire area! So I spent a good part of the day by the computer, researching and reading. As the day wore on, so did I, and at some point, I had to put my head down and rest.
This evening I attended my first Georgetown University Hospital pediatric parent advisory board meeting. I applied for a seat to sit on the board, and was accepted. I had the opportunity to meet the parent chair of the board a few months ago. She is a lovely individual and we share the fact that we both lost our sons at the Hospital. The other board members are comprised of Hospital staff and fellow parents. However, it is very hard for me to sometimes hear these success stories. In fact, before the meeting started the parent members were all talking about their children. Certainly a natural thing to do, but I had nothing to talk about. I could relate to what they were saying, but I couldn't participate in what they were saying because I am no longer a parent. That was a hard rude awakening. In fact, revisiting the hospital was also a rude awakening. As I was leaving the hospital, which was around 9pm, I was walking down the hallway, a hallway I walked many months with Mattie. It was an eerie feeling which left me feeling more alone, isolated, and upset.
I had the opportunity to learn about the board's mission tonight as well as brainstorm some of the activities we would like to work on to help improve the quality of lives of pediatric families at the Hospital. Keep in mind that there are three pediatric units on the fifth floor of the hospital. This was the floor where Mattie spent a good chunk of his cancer life. On that floor is the PICU unit, the HEM/ONC unit, and the transplant unit. The chair of the board was explaining to the new members that a family care survey was created by the board and is now being distributed by the PICU staff. The survey is designed to capture the feelings and insights of families regarding the level and quality of care they receive at the hospital. However, what caught my attention is the fact that the only families allowed to participate in this survey right now are PICU families. The other two units on the fifth floor do not have access to this survey. I am not sure what message that sends out!!! Maybe HEM/ONC and transplant families are not as important?! As a parent who spent an enormous amount of time on the fifth floor, I feel like I can safely say that I have a solid understanding for the dynamics, responsibilities, and culture of the fifth floor. Each of the three units has its own dynamic, and what other board members may not realize is that living in this community for over a year, makes me privy to insights that an outsider may not know about. Insights as it relates to how units get along with each other, and the overall climate of the units and the floor. You may ask how do I know this? Well all I can say is when you spend an inordinate amount of time in one place, you make observations, you get to understand the cast of characters, and the problems in your community. It is equivalent to getting to know your neighbors.
So when I heard that only one unit was asked for family feedback, I took great issue with this. Mainly because the parents in the HEM/ONC and transplant units spend a large amount of time hospitalized. If you want accurate feedback, asking these folks in my opinion would be your best bet. Many of the patients in the PICU are short term stays and a good deal of patients are intubated and can not participate in many of the services even offered to the children. So seeking feedback from short term stays doesn't seem to compute in my mind. In addition, I wanted to know why these other two units were not represented by hospital staff in these board meetings. When I came home and told Peter what I was saying, he simply made me laugh. He said the PICU staff is most likely saying, "oh SH** she is back again!" Needless to say, I needed that funny line after how I was feeling all day today. When I joined this board, my goal was to help all of pediatrics, not just the PICU, and after our 15 month battle dealing with cancer, I feel it is important that these families are adequately represented.
After the meeting was over, I had the opportunity to chat with the chair. She too is experiencing an anniversary of her son's death, and through our conversation we both landed up in tears. She was saying many of things I felt. That time doesn't help. Even after four years, the loss of her son is very real, and at the same time, we both struggle to remember the happy details. The gruesome ones are on the forefront of our minds. We also talked about the impact of such a death on a married couple. For those of you reading this blog, who are married and have children, I ask you to reflect on what you and your spouse talk about!? The most likely response would be you talk about your children. Their days, their goals, issues, problems, and their successes. Okay, now picture that you wake up tomorrow and you have NO children. They were taken from you, and they aren't coming back ever. Now what do you and your spouse talk about? You have been programmed for years to talk about your children, but now what? What unites you? What keeps you moving on toward a future? The answers aren't so clear, and it takes a great deal of healing to find a way back to finding one's self, much less finding and repairing a relationship.
Peter updated the Foundation website today and gave a beautiful detailed overview of the September 16th pediatric cancer caucus we attended. If you want to read more, please visit: https://www.mattiemiracle.com/Pediatric_Cancer_Caucus.html
I would like to end tonight's posting with a message from Mattie's oncologist and our friend, Kristen. Today is Tuesday and represents the 54th week of Mattie's passing. Kristen has not forgotten. I learned pretty early on in Mattie's treatment process that Kristen is just as sentimental as I am, and it does not surprise me in the least her level of devotion to us even after Mattie's passing. What a doctor, how do we create more physicians like her?!!!!!!!!!!!! Kristen wrote, "Today is Tuesday. It is not just another Tuesday either, because I realize all of the "other Tuesdays" ended 54 weeks ago. Now, every Tuesday is a statement and a testimonial. Every Tuesday is a remembrance and a reorganization of priorities. Every Tuesday is a reminder for me to tell two of the most amazing parents in the world that I am thinking of them. Thinking of you this Tuesday and every day."
1 comment:
Vicki, You will always be a parent in my book. -Leslie McCleary
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