Tonight's picture was taken in October of 2004. Mattie was two and a half years old and this was his first year going to fall festivals. Actually it was also a FIRST for Peter and me!!! There were NO such things as these massive fall festivals when we were growing up. When I say a fall festival I mean an event that is open to the public and runs for more than a month in one location. This event can consist of large slides, hay wagon rides, moon bounces, other rides and activities and corn mazes. If you want to see a link to a local farm that has everything possible that one could want to do, go to: http://www.coxfarms.com/attractions.aspx. They even have something after hours for adults that looks like it would be the perfect Halloween treat for the brave of heart and spirit. In 2004, when Mattie first went to these fall festivals, he was intimidated by these HUGE slides. As was I! Mattie always had a fear of slides, but with Peter's help, Mattie bravely went down them. As Mattie got older and with each subsequent year we brought him back to the festivals, he eventually went down these slides ALL BY HIMSELF!
Quote of the day: Find what is meaningful to you and stand by it. Even if you begin to wonder if there is any meaning to anything, continue to be yourself. ~ Jay Woodman
Peter and I had a full day today! It started with us being locked out of room! We had been having trouble with our room keys since last night but the hotel kept insisting that it was us who did not know how to use the keys properly! By this morning I had just about had it! I had security up at our door and hotel management. By the time they assessed it, they agreed with us! The problem was significant and we needed a new room! So that meant we had to pack up all our items and move later in the day because this 1300 room hotel was fully booked and couldn't accommodate us into another room until after 3pm! The timing of this was really rotten because we missed a good portion of the morning events.
Our entire 1300 room hotel is fully booked for this conference!!! This is a very unique conference because multiple disciplines are meeting at the same time. So literally it is like three conferences are taking place at ONE time. One track is geared for parents and survivors of childhood cancer, another track is geared for medical doctors, and the final track is geared for psychological professionals. Peter and I juggled back and forth today between the parent track and the psychological track! The main issue I am having is ALL the sessions are 15 minutes long. My brain doesn't absorb anything in this time frame and if that wasn't bad enough everything was back to back. So right after one 15 minute session was another and so it was hard to process what you just hard, much less ask a meaningful question.
This afternoon, we addressed the audience of international parents. There were about 150 parents. Our topic was "When tragedy inspires hope: A parents' call to action to create a psychosocial standard of care for childhood cancer." Our presentation was well received and parents really appreciated our voice and our desire to advocate for psychosocial care. Keep in mind that this is an international audience and we are advocating on a national level. But they did not take issue with this! They saw the merit in the message!
What our message ultimately was.... is that psychosocial support is crucial and it has to happen beyond the treatment phase. It must continue into survivorship, or end of life care and especially into bereavement and grief. I mentioned that survivors and those in bereavement are the forgotten ones and this has to change. This resonated with everyone in the room!!!
After our presentation, the audience had the opportunity to ask questions. We received several questions about our actual standard. People wanted to know what a sample standard sounded like. So Peter read one of our standards to them! They had other logistical questions. Then one man stood up and thanked us for our courage and hard work. He said he knew the labor of love this entailed. He then proceeded to tell us that he too lost an only child to osteosarcoma. Multifocal osteosarcoma, just like Mattie! Multifocal osteosarcoma is VERY RARE! So rare, I never met another child like Mattie who had it, so this man caught my attention immediately. What I could tell as he was talking to me was he understood my pain deeply and wanted to convey this. He wanted me to know that he had to divorce his wife, that they no longer shared a bond anymore after the loss of his daughter. He also then stated that he felt that from observation it seemed like Mattie's death took its toll out on me the most.
I have to say that I wasn't necessarily expecting such a profound comment to be coming at me from a perfect stranger. How could someone I never met, who hasn't even spoken to me before, know me better than people I interact with on a weekly basis?!!! Yet I was standing in front of a room of 150 people and he just made a very emotional and tender disclosure about himself that needed to be acknowledged. So I went back to my roots...... I became a counselor. I reflected back on what I just heard and validated what he was saying. I especially wanted him to know that his daughter must have been a special child too, just like Mattie. Somehow that comment truly resonated with him. At the end of the session, the moderator, dedicated the session to Mattie and this man's daughter! Which I thought was truly meaningful!!!!
I debated how to prepare for today's presentation. I could have gotten uptight about specifics, but I decided that in a group of fellow parents I have to be real. We have all lived this topic and therefore coming at this presentation from this approach was the only way I could mange doing this in the allotted time. Because frankly I can't do anything well in 15 minutes. I don't like time constraints especially when talking about Mattie.
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