Tonight's picture was taken on June 18, 2006, Father's Day! It is hard to believe that this was seven years ago today. None of us knows what the future holds and I certainly never thought we wouldn't be having more Father's Days with Mattie by our side.
Quote of the day: Moral wounds have this peculiarity - they may be hidden, but they never close; always painful, always ready to bleed when touched, they remain fresh and open in the heart. ~ Alexandre Dumas
I had several meetings at Georgetown University Hospital today. One meeting was about the adoption of a psychosocial screening tool (I don't mean a hammer or screwdriver, I am referring to a survey or questionnaire that has both reliability and validity with the childhood cancer population) in the pediatric oncology clinic. I had brought this issue (the need for such a screening) to the medical director's attention about a year and a half ago. Today we all met to discuss this possibility, a possibility that will come to fruition thanks to a grant received by the Hospital. From my standpoint, psychosocial care is as important at the medical care a child and family receives. Therefore, as soon as a child is diagnosed, from my perspective, psychosocial screenings need to be conducted. As it stands now, hospitals tend to provide services only when a psychological issue or crisis arises. By this point, especially in cancer care, too much emotional damage has already occurred. Therefore offering families psychosocial screenings early on in the process, will enable them to get the support they need during each stage of treatment. In addition, the beauty of having a screening tool is that it can help medical professionals determine which families need support and interventions right away.
We had this meeting today in the clinic's library! That may not sound earth shattering to any of you, but perhaps it will when I tell you what this room means to Peter and me. It is within this library that we first met with Mattie's care team to discuss Mattie's cancer, his treatment, and then also broke the news to Mattie that he had cancer. It is within this room that we received test results of Mattie's which indicated his cancer spread, and it is within this room that we learned that there was NOTHING else that could be done for Mattie medically. So in all reality, this is not a room with many good memories. Yet for mostly everyone else in the meeting, the room was just a room! Not sure what to say about this reality, other than it registered with me.
Another fact that registers with me is that few grant making entities want to hear the insights and feedback from parents like myself.... a parent who lost a child to cancer. Therefore, when designing a research study (a study which will be funded) in most cases the conditions of the study stipulate that the parents participating in the research must either have a child in treatment or one who is in the survivorship phase (meaning off treatment with no evidence of disease, or managing the late effects of cancer treatment). I am not sure about you, but this reality is a hard pill for me to swallow. I can't think of a better way to make bereaved parents feel more alone, isolated, and disengaged from the world. Basically such grant making entities are saying that our voices do not need to be heard, or simply they are not willing to fund a study to hear our perspective. Our perspectives do not matter or count because of the outcome. It is a humbling fact, and unfortunately I have faced this ugliness before, not just today!
The second meeting I had at the Hospital was with one of Mattie's nurses. Over a year ago, Anita, asked Mattie Miracle whether we would consider funding a monthly support group luncheon for pediatric nurses. We agreed to this in 2012, and now we are funding this luncheon for the second year in a row. Mattie's nurses are very special and competent individuals. They work extremely hard and need outlets to help them manage difficult situations, crises, and challenges. Peter and I are big nurse advocates and we believe if nurses feel supported they can perform their jobs even more effectively. Anita and I chatted about the group, its progress, and a host of other things. It was lovely to catch up with Anita, but as I reflect back on 2008-2009, many of Mattie's in-patient nurses no longer work at Georgetown.
Switching gears, I came across a story today about a seven year old boy named Miles Ambridge. Miles is in a wheelchair and has a genetic disease called spinal muscular atrophy. The title of the story is Miles Ambridge, 7-Year-Old In Wheelchair, Isolated By Photographer In Class Picture. When I saw this child's class picture, my mind and heart aches. It reminded me of Mattie and how people who passed him by would either glare or ostracize him. Needless to say, when Miles' family saw this class picture they were very upset. It features Miles truly separated from the class!!! I think there is a learning lesson to be found in this story! I do not think the photographer meant to single out Miles, and who knows what his teacher was thinking when this photo was taken. Most likely she was simply trying to manage the entire class and take the photo. But sometimes when you have a child with a special need in your presence, special accommodations do need to be made. Putting that aside, I think we all need to be aware of our surroundings, who is amongst us, and how we would wish to be treated if we were in Miles' shoes. Chances are if everyone around him had that mindset, and not just a mindset but an appreciation and sensitivity for our fellow human beings, such a photo would never have been taken in the first place.
http://www.huffingtonpost.com/2013/06/17/miles-ambridge-wheelchair-class-photo_n_3454857.html?utm_hp_ref=mostpopular
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