Tonight's picture was taken in September of 2005. That evening before heading to bed, Mattie want to read books in my bed. So we had a cozy story time and clearly Peter captured that moment. Which I am so glad he did, because this photo helped to jog my memory tonight. Otherwise, I would have to say I forgot about such occurrences. What I won't forget however, was those weekend mornings when Mattie would run from his room into ours and come over to my side of the bed. Alerting me that it was time to get up!
Quote of the day: How very little can be done under the spirit of fear. ~ Florence Nightingale
Today we attended Curefest on the National Mall in Washington, DC. This is an annual event in which the majority of attendees are families impacted by childhood cancer. The event provides the opportunity to meet other non-profits and to talk with others whose lives have been affected by the same disease.
Sunny and Indie have a way of arising by 5am. Not my hour, but today it was needed because we left our home at 7:30am to walk with Sunny to the National Mall. It was a rather pleasant 2.5 mile walk in the morning, despite having a cart load of things in tow and several posters. But we made it.
The weather today was the HOTTEST it has ever been for Curefest. Last year I was in fleece and the wind was fierce. This year, we would have welcomed a wind. It was stifling, humid, and the sun was intense, even under a tent. In fact, I want to say the tent traps in the heat.
This is what our tent set up looked like. Hanging on the right side of our tent were our selfie posters. On the table was a lot of informational placards about Mattie Miracle, our brochures, business cards, a copy of the National Standards of Care, and fun give-a-ways like t-shirts, friendship bracelets, bendable toy animals, and awareness ribbon stickers.
I thought I could manage the booth myself today, but I was sorely wrong. Marisa helped us with set up and really fielded many people coming up to talk with us. She did a great job, because it is hard to talk to everyone at once.
Ann sits on the Mattie Miracle board, but also was our Team Mattie coordinator. A role that was absolutely vital and necessary throughout Mattie's cancer battle.
Margy brought treats for Sunny today which were a total hit!!!
I think today's surprise was that out of the blue an interviewer and camera person came to talk with us. They were selecting a few Foundations to talk with, and they selected us. Not sure what drew them to us, but they had us tell our story, explain our mission, and hopes for childhood cancer. They asked us how we learned about Mattie's diagnosis and also wanted specifics about how psychosocial support helped in our lives. I relived for them how Mattie was diagnosed. Mattie was attending a tennis camp in July of 2008. After the first week of camp, Mattie complained of arm pain, but by week 2, he couldn't lift his arm. Fortunately when I took him to the pediatrician, she took our concerns seriously and ordered an xray. Honestly she and I did not think much would be found, but she was being cautious. It took 45 minutes to do a simple xray and I remember being annoyed at the tech. Once the x-ray was complete the tech took me to a waiting room. It was a tiny room and inside the room were other adult patients. While waiting, I was trying to entertain Mattie when the phone in the room rang. No one went to answer it. So I did. The radiologist asked if I was Mattie's mom and when I said yes, he told me I had to report back to the pediatricians office. But it was how he said it, that made me pause. I literally told him I wasn't moving until he told me the xray finding. Of which he did. I heard that Mattie had cancer over a phone, with other people watching me, along with Mattie by my side. I moment I will never forget.
But I explained to the interviewer today that psychosocial support comes in many forms. Not just through professionals in the hospital. In fact, I told them about our care community which was comprised of Mattie's schools, and our places of work. All these communities united together. But remember many of the people within these communities who did not know each other. Yet they started pitching together, coming up with plans, and rose to the occasion to deliver food around the clock to us for 14 months. Not to mention toys and gifts practically daily. Whatever was needed, I just needed to ask and it was delivered. It is actually very hard to go from living such a public and important life to the life I live now, but I did not happen to mention that psychosocial adjustment. Nonetheless, I wanted to make it clear that support comes in all forms and sometimes ordinary people can do extraordinary things, things that can alter the outcome of a really bad day for the child and the family. The interviewer plans on sharing this clip with us, so we shall see!
1 comment:
Vicki,
Starting with Mattie's picture reading stories with you, followed by the excellent quote, all the pictures from CUREFEST, to the fact that you & Peter were Interviewd, told so much!! I am grateful the interviewer found Mattie Miracle to be interviewed. Listening to you & Peter talk always increases my hope that one day very soon, there will be the support that is desperately needed. There are many people that think Child life, Social Work, and other resources available are enough. No one disputes these resources are truly needed but so is the one on one care that the psychosocial support, you are working to get implemented, would provide. Children and their families need this support to be equal to the medicine, that the children receive. It is hard to believe more people don't see this. Thanks Vicki & Peter for starting this in memory of your Mattie. Thanks for not giving up but continuing forward to see it implemented.
I will close with how much I loved meeting Sunny. He fits his name and definitely would make an excellent therapy dog should you choose this. He is so gentle!
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