Friday, September 2, 2022

Friday, September 2, 2022

Tonight's picture was taken in September of 2008. It was Mattie's second month with treatment and by this point he really understood the routine and being confined to a his room. However, that did not stop him from being a kid and wanting to have fun. That evening Peter blew up gloves and Mattie and I thought they looked just like turkeys. Mattie was doing a little show with these gloves and tried to catch the attention of nurses and whoever passed by in the hallway. Got to love his spirit.  

Quote of the day: Act as if what you do makes a difference. It does. ~ William James

This morning I got up at 6am, so that I could give Sunny his pre-meds and an hour later his chemo. It was a busy day, as I had to get my mom to the hospital for a pulmonology appointment and also drop my dad off at his memory care center. I feel like I am running and running and never have a minute. 

After my mom's appointment, I suggested that we sit in the atrium of the hospital lobby and have tea. I needed an hour to not to be running around. While there, my mom snapped this photo. Today I have a migraine and the tell tale sign is my eyes are not even and hard to keep open. While in the atrium our favorite pianist was playing.

I have been to a lot of hospitals, but Virginia Hospital Center is very patient focused. Everyday from 11am to 1pm, there is a pianist in the atrium playing music. I swear I felt like I was sitting listening to a concert. It was peaceful and it reminded me how much I love and miss music. 

This is a video of Aija Kim (from YouTube). She is the musician who volunteers her time weekly to play at the hospital. She plays absolutely beautifully and with great feeling. As many of you know, I am GOOD at complaining, but I am also good at providing praise when it is earned. Each time I hear Aija, I go up to her and tell her what a huge difference she is making to our lives. Her music is a gift, especially when my body, mind, and spirit are exhausted. I plan on writing the patient relations people at the hospital letting them know how much this music program means to me and so many others in the atrium.

Meanwhile, September is childhood cancer awareness month. This summer, I was contacted by the American Psychological Association's Caregiver Wellbeing Special Interest Group. They told me they wanted to do a social media campaign in honor of this month and focus on the Psychosocial Standards of Care. I was ABSOLUTELY behind this project and had the opportunity to work with Allie, a doctoral student and member of APA. The campaign was launched yesterday and there will be postings every day this month. I am deeply grateful to APA's Division 54 and their commitment to the Standards and for especially highlighting the importance of psychosocial care and support (NOT JUST THE MEDICINE) during this awareness month. 

Here are some of the postings that went out between yesterday and today. During this month, quotes from Mattie Miracle will be featured, along with messages from all the first authors of each chapter in the Standard of Care publication! I admire the commitment of the authors of the Standards, as they continue to give freely of their time and expertise to move this vital project forward. 

This is Dr. Lori Wiener. Peter and I have worked closely with Lori since 2011. It is thanks to Lori's leadership that our vision for Standards of Care became a reality. I am continually amazed by who has come into my life thanks to Mattie. Lori is one of those gifts. There is nothing she can't accomplish and though my world is filled with caregiving for my parents, when opportunities arise, Lori always includes us. This means a lot to me.