Thursday, August 31, 2023

Thursday, August 31, 2023

Tonight's picture was taken on August 7, 2008. It was Mattie's first week in the hospital. That day, Linda (Mattie's child life specialist) set up a painting project right outside Mattie's hospital room. Back then, the hospital did not have a playroom, so there was really no space for the children to congregate and play. When given the opportunity to paint something, Mattie decided to paint the sun and the earth. It is no surprise why the SUN became the symbol of Mattie Miracle. Mattie incorporated the sun in practically every drawing and painting he ever created. 

Quote of the day: To tie a knot at the end of your rope means that you have a rope as well as the ability to tie a knot. And while that’s not necessarily great news, imagine what things would be like without a rope or ability. ~ Craig D. Lounsbrough

Last night, my lifetime friend, Karen, asked me..... did you see the Blue Moon? When she said that, I immediately thought of my maternal grandmother who used the expression... "once in a blue moon" all the time! But as I have learned (thanks Karen!), a blue moon refers to the second FULL moon that appears in one calendar month. 

I went outside to look for the moon when I brought Sunny inside for the night. But I did not see it. Then I immediately thought while in my bedroom..... look outside at the front of the house. Sure enough my big Mattie Moon was there to greet me. Right through my bedroom blinds. It seemed like a very meaningful way to end the day, with Mattie and me thinking of each other. 

When I woke up this morning, I was greeted by this photo in a text message. The woman you see here is Amanda Thompson. She is one of the authors of the Psychosocial Standards of Care. She was doing a presentation in Scotland at the European Pediatric Psychology Meeting. Looks whose photo is on the screen? Mattie made it to Scotland!!!! As the anniversary of Mattie's death is upon us in a week, it is very meaningful to us to receive these reminders of his legacy work. 

It was another full day of running around. I took my parents to the podiatrist today, as my dad qualifies for a pair of shoes through Medicare. Medicare pays for shoes once a year for older patients with diabetes. The doctor literally measured my dad's feet and used an I-pad to take images that created a 3-D model of his feet. What I have learned is that his current shoes are TOO tight on him. Which is ironic since he got these shoes from his podiatrist in Los Angeles. I have no idea if that doctor measured my dad's feet or what, but today's podiatrist chastised me for selecting shoes that didn't fit my dad properly. Needless to say, I was in NO MOOD to be talked down to, so I pushed back. The podiatrist is edgy, so you can imagine together, we are quite a combination. This is not the first mistake my dad's podiatrist in Los Angeles made. Which is why I am glad I am now overseeing his care, and can proactively address issues like infections (which he had on his feet) and shoes. 

My dad stopped taking steroids on Sunday. The steroids helped him tremendously with his allergic reaction to antibiotics. But now we are dealing with the consequences of stopping them. He is lethargic, chronically exhausted, and seems stupefied. This reaction has happened in the past, it doesn't surprise me, but all I can say is WOW! 

It is now 6:30pm, and I am escaping the house to get fresh air and walk. As the weather starts turning colder, I am not sure what I am going to do. Because for me the wonderful part of walking is being surrounded by nature and away from the house.