Thursday, May 5, 2022

Thursday, May 5, 2022

Tonight's picture was taken in April of 2004. Mattie had his second birthday party days before this photo was taken. I decided to leave up the activity sheets I taped up on the wall for party. I did this because Mattie loved coloring them and checking them out. This photo was literally taken as Peter came home from work. Mattie greeted him and wanted to show Peter some things on the wall. Regardless of the fact that Peter had a long day at the office, Mattie was always a number one priority and Peter eagerly engaged with Mattie whenever they were together. 

Quote of the day: Patience is a conquering virtue. ~ Geoffrey Chaucer

It was another crazy morning of running around. I got my dad up, showered, dressed, and downstairs for breakfast. We than all got in the car, dropped my dad off at the memory care center and then drove to the National Institutes of Health in Bethesda, MD. Our trunk was loaded with toiletry items for our Snack and Item cart, and we were invited to take part in a cart reveal party. 

Though I wanted to bring my dad with us, I knew he would never make it. As getting onto the NIH campus is like entering Fort Knox. In addition, a lot of walking is involved. Which he hates. Not to mention that I never know when he will need to run to the bathroom. So I felt the best decision was to take him to the memory care center for today. It turns out I was right! As Peter says, it takes longer to get on campus and go through security than it actually takes to drive to NIH from our home. That may sound funny, but it is the truth. It takes a good hour to process through, as you have to get out of your car, your car has to be inspected, and you have to walk through metal detectors and show ID. 

This was the invitation that went out to the NIH community about our Cart, which they call Wellness on Wheels. Before the ceremony we met with Lori, who works at NIH and we have been connected with her since 2011. We may have had the vision for Psychosocial Standards of Care, but it was Lori who provided the leadership to get them created and published. In addition to Lori, one of Mattie's doctors now works at NIH. We absolutely love Corina, and it was so special to reconnect with her today. She is an outstanding advocate and helped me tremendously when Mattie was hospitalized. She was the only doctor who never said to me that Mattie was addicted to pain medications or that he was developing an eating disorder. She understood the true nature of Mattie's cancer and how he was suffering. 

This is Corina with Mattie back in April of 2009. She is a doctor that thinks outside the box. She had to examine Mattie, but he wanted nothing of it. So she made a deal with him. He could use her pager and in turn Mattie would let her examine him. 

It was challenging talking to a group of people with a mask, but we did it. One of the NIH doctors who spoke mentioned that as a doctor he feels our cart provides junk, and not healthy foods. Mind you he expressed this to the crowd. When Peter and I spoke, we literally gave it to him. Clearly this is a doctor who has NO understanding for the stress of being in a hospital and caring for a child with cancer around the clock. As I said in my talk today, when stressed and dealing with non-stop traumas, one doesn't turn to an apple or a granola bar.... but to sugar. What a clueless wonder and I was having NONE of it. Mind you we donated the cart, so you think he would have been more politically sensitive, or at least be appreciative. 

My mom, me, Lori, and Peter. 

This little boy, Luciano, is from Peru. He is being treated for a blood disorder at NIH. He was on hand to unveil the Cart for us. He was an absolute cutie and once he saw the Cart, he opened every drawer and helped himself to its contents. Check out the video. 

Meanwhile back on the home front, we are inundated with frogs. Do you see him?

Our latest find is we have a turtle in our front flower bed!