Tonight's picture was taken in January of 2004. Wrapped around Mattie was his favorite blanket. Mattie received many blankets as gifts, but the fleecy texture of this one caught his attention. It is ironic when I look at this photo how different our living room is now! Back then it had all the signs of a child living in our home, filled with toys, books, puzzles, and all the other gear that comes with having an active and healthy child. However, our living room also saw the other extreme because in 2008, it housed a hospital bed, IV poles, a commode, pain pumps, and a great deal of other hospital supplies. All the signs that we lost our healthy and active child. Now of course, there are remembrances of Mattie all over the living room, but it will never be like the photo captured here.
Quote of the day: If your actions inspire others to dream more, learn more, do more and become more, you are a leader. ~ John Quincy Adams
Today I had the opportunity to visit my friend who hasn't been feeling well. While at her home, I got the chance to chat with her daughter and also spend some time with my friend's grandchildren. Both of whom are adorable. One of the children has to be around six months old and he is crawling up a storm. At one point his mom had to go assist my friend and therefore I got to interact with the children. Something I haven't done since probably Mattie was alive. Any case, as all young ones do, the six month old started crying when his mom left the room. So naturally I picked him up and tried to comfort him. But I knew that wouldn't be enough. Mattie taught me well. When Mattie began to cry at that age the number one way I could calm him down was by distraction. I would pick Mattie up and if at home we would walk over to a window and examine cars, trucks, and planes going by. This always grabbed Mattie's attention from day one! He simply had a fascination with locomotion and how things worked. It is funny, I did not expect to have this memory today while visiting my friend, but certain activities and circumstances can trigger such thoughts and memories of Mattie. This was an unexpected moment and life for a bereaved mom is filled with a whole bunch of them!
Today I had the opportunity to connect with the organization which invited Peter and I to be a keynote speaker at their May conference in Ohio. We are going to schedule a conference call to discuss the specifics, but for my interested readers, the organization's acronym is APHOES (http://www.aphoes.wildapricot.org/), which stands for The Association of Pediatric Hematology Oncology Educational Specialists. They would like us to speak for an hour and they are very much interested in how on earth we pulled together a multi-disciplinary team of mental health professionals to draft a psychosocial standard of childhood cancer care. I am motivated and passionate about the Foundation's mission and goals, and of course keeping Mattie's memory alive. I learned early on in the childhood cancer arena that I would have to stick to my convictions and follow my own heart. A part of me was stunned to see the competition and turfdom issues in the childhood cancer group and association space. I must admit of course that this is life and human nature, but I do not see a place for such behavior when discussing childhood cancer. So at one time I was active with different groups and then after countless negative experiences, I realize this wasn't helping me as a person. I was already grieving and feeling badly, I did not need to feel that I also couldn't make a difference.
When I received an email today from a leader in the field, who I don't know and who is praising Mattie Miracle's work, it makes me stop and pause. Not that I am sending up balloons and confetti, not at all, but it signals to me that on some level we are making a difference and we are uniting people together toward a common mission..... a psychological standard of care. In many ways, Peter and I had the DREAM to have such a standard of care, and we used the platform of the Foundation to INSPIRE mental health professionals (who are naturally committed to their own field and children with cancer). So I guess from John Quincy Adams' perspective.... we are leaders! At the end of the day of course my question is always..... would this make Mattie proud and is he happy with what we are doing? This is our ultimate compass!
No comments:
Post a Comment