Wednesday, August 18, 2021

Wednesday, August 18, 2021

Tonight's picture was taken in August of 2008. It was our first month in the hospital and during that time we got to meet many of the wonderful artists who volunteered their time in the pediatric units. This was Jude, he was one of the musicians that Mattie enjoyed getting to know. Jude always brought interesting instruments with him and that evening Mattie learned about the rain stick and the ways it was used to create music. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 37,146,915
• Number of people who died from the virus: 624,199

Today was another day of organizing and cleaning out. Each day since the middle of June has been filled with this kind of taxing work. It isn't only taxing, it is emotional. I am posting about several notes I came across today. 

In March of 2016, Mattie received this letter in the mail. Students at the George Washington University were raising money for the American Cancer Society. I am not quite sure how the student got our address or knew Mattie had cancer, but there you have it seven years after Mattie died, we get this envelope. It wasn't just an invitation, but an invitation to a survivor's reception. 

You can only imagine how well this was received by us. Needless to say we wrote to the leadership of the American Cancer Society, as I did not want future bereaved families to experience this insensitivity. The American Cancer Society did respond to us and that year they got involved in the Foundation's lobbying efforts on Capitol Hill.   

Peter and I received this thank you note for presenting at a national social work conference. The note says:

Thank you so much for the wonderful presentation to APOSW. Your work is amazing and there were so many at the conference who commented on how much they appreciated your words and work on our behalf, and that of our patients. 

This note was sent to use by the head of the child life association. It says:

On behalf of the board of directors, CLC, I want to thank you for meeting with Jim and I last week. It was a true pleasure to meet you both in person and to learn about not only the Standards but also your vision to move your efforts forward. I am humbled by the magnitude of your work on behalf of families and staff when a cancer diagnosis brings them together. I've spent a few moments on Mattie Miracle Cancer Foundation's website and found that the moments turned quickly into 30 minutes! I'll carve out more time to finish reading. Mattie is a beautiful boy! You are very generous to share such lovely, meaningful photos with those who read the site. Peter, the post about your experience on Father's Day and Vicki, I imagine for Mother's Day is so honest and creates a space for parents to love, and cry, and grieve, and to celebrate their family. I predict Jim will be in contact with you shortly on behalf of CLC.

This note was written to us by Mattie's oncologist. Literally for the first year after Mattie died, she emailed me EVERY Tuesday! I literally mean EVERY Tuesday, as Tuesday was the day Mattie died. This note was sent on the 6th anniversary of Mattie's death. It says:

Although time has passed by and miles have distanced us, I want you to know that today especially and always you are in my thoughts. Despite the years, I vividly recall the many moments we shared in discussion, in laughter at Mattie's antics, in his dreams, in his creativity, in hope, and in complete and utter sadness. My heart still aches. I want you to know how much you mean to me. I want you to know how you and Mattie serve as an ongoing inspiration and example to me. I want you to know how thankful I am for you and your precious Mattie. Thinking of you, on this Tuesday and always. 

When Mattie was in preschool, one of his classrooms was called the Block Room. His teacher, Kathy, created a news sign each day of the week. Because the school was a co-op program, parents were required to volunteer in the classroom. So on Mattie's line leader days, I was the parent helper in the room. 

The fun part of the "news" is it announced who the line leader was, how many days the children were in school (so this was day one of school for the year), the plans entailed which rooms in the school were open for them to explore and play in, and Kathy always posted a cute good-bye saying. 

This good-bye was "blow a kiss jellyfish."

For the longest time (try 15 years!), these Block Room news have been on my kitchen wall. I am not sure why, perhaps because it was at this preschool that Mattie truly grew, developed, and formed his first friendships. Also while Mattie was forming friends, so was I, with fellow moms. Moms who continue to play a significant role in my life today. 

 

The good-bye saying on Day 13 was "see you soon baboon."

This was day 27 and the good-bye saying was "out the door dinosaur."

Day 30's good-bye saying was "toodle lo kangaroo."

Day 39's good-bye saying was "Don't eat too much turkey lurky!"

You maybe asking what is that symbol next to Mattie's name?! It was a MAGNET. That year, Mattie was "Mattie Magnet," as the school matched names with symbols that started with the first letter of a child's name. The previous year Mattie was "Mattie Moon." A name that stuck with him!

Day 57's good-bye was "don't forget your hat.... kitty cat."

Day 75's good-bye was "see ya soon raccoon."

Day 85's good-bye was "to the park shark."

Believe it or not the kids loved the good-bye sayings and they eagerly looked to the news that day to see which one Kathy selected!

The school did a big party on day 100. On day 107, the good-bye was "see you round.... hound."

Tucked in my kitchen's spice rack was a card I received in December of 2009 from one of Mattie's babysitters. She wrote,

I want you to know that you are always on my mind, constantly in my thoughts and forever hold a piece of my heart. I continue to think of my Mighty Mattie. Everything seems to remind me of him. I picked up the most perfect leaf off the ground because I thought, "Mattie would love this." I had to stop and watch the movie "Cars" on TV the other day because Mattie and I used to watch it together. He will never be forgotten. I hope you feel some comfort in knowing how deeply he has touched my life as well as many, many more. I still read the blog everyday and smile and cry with every story, picture and memory that you post. I love you, miss you, and wish you comfort and healing as we begin this new year. 

I had no idea how challenging disassembling the kitchen would be! It has been a nightmare. Today I tackled the rest of my tiles on the wall and the magnets on my refrigerator. Literally every place we visit, I get a tile and a magnet. Needless to say, I have a lot of travel reminders!

So many magnets that they extended to the side of my refrigerator!

However, in and amongst the magnets was this cartoon. It says, "There are plenty more hugs where this one came from Mommy." It was a cartoon both Mattie and I loved. 

These little drawings have been on my refrigerator since Mattie created them! I took them down but have saved them. 

To me the refrigerator looks barren. 

I miss the whimsy of what our refrigerator used to look like. 

I took this card off of the refrigerator today. Mattie got it in June of 2008, a month before he was diagnosed. That day he went on a canal boat ride with his friend Charlotte. The boat was pulled by two donkeys.... Molly and Ada. 

This was one of the decorations on Mattie's 6th birthday cake. That year he had a Scooby Doo party. 

Pictured with Mattie was Zachary. Mattie and Zachary were very close friends. Their friendship formed on day one of preschool. After school they would go on playdates together. On two separate occasions they went to Chuck E Cheese together and the boys got their photo taken each time.  

For Mattie's fourth birthday, he had a dinosaur themed party. At the party, each child got a dinosaur placemat. All these years, I kept several unused placemats. I am not sure why! But that's me. 

This was the front of the placemat!