Quote of the day: "Nothing you do for children is ever wasted. They seem not to notice us, hovering, averting our eyes, and they seldom offer thanks, but what we do for them is never wasted." ~ Garrison Keillor
Before I tell you about our day, I wanted to share four more pictures with you from Saturday's dance recital. Ann sent these along to me today, and I am so thrilled she snapped a close up of Katie's eyes.
Left: A picture of Katie right after I put on her makeup.
Right: Abigail getting ready to perform with her class.
Left: Katie with her good friend, Lexi. Lexi is visiting Katie for the week, and I have enjoyed getting to know her as well.
Right: Michael (Ann's son) with Abigail. Michael was a real sport, since he sat through a two and a half hour dance recital!
We woke Mattie up around noon today. He did not want to get out of bed and when we tried to lift him up, he felt like he was glued to the bed. Mattie had the good fortune of playing with Louise today. Louise just graduated from SSSAS and is headed to college in the Fall. Louise has a wonderful and calming rapport with Mattie, and after the week I had with Mattie, I wasn't sure how he would react with Louise, but I figured it was worth a shot, so that Peter and I could get a break together. Things worked out beautifully with Louise. They played Legos, played in the teepee that Louise gave him, and they even had a visit from my former student, Susan C. Susan lives in Illinois now, but she was in town and stopped by to give Mattie a few gifts. I am sorry I missed seeing you Susan! Thanks for thinking of Mattie.
Louise also shared two special books with Mattie, that were her favorites, The Chronicles of Narnia, and The Islander. Thanks Louise! While Louise was with Mattie, Peter and I went to Washington Harbor, which is an area along the Potomac River in Washington, DC. Though it was an overcast day and at times drizzling, we ate lunch outside. Looking at the water, the boats, people, and chatting. Peter and I love the water, and there is something very calming about being by it even in the middle of the city. After lunch we headed for a walk on Roosevelt Island. I have vowed not to go back to Roosevelt Island again with Mattie in a wheelchair, after he got stuck in the mud and fell over two weekends ago. However, today's walk was very pleasant, and I captured a wonderful sight along our walk. A beautiful deer! The irony is that Roosevelt Island is SO close to the city, and yet it is inhabited by deer. When we got back home, Mattie was having a good time with Louise. After we said our good byes to Louise, we packed Mattie up and headed over to Ann's house. Ann had invited Mattie to a family cookout last night, but because he did not feel like going yesterday, she rearranged the cookout for today. I was happy that Mattie decided to get out of the house and to play with Abigail. When he got to Ann's house, he started off very tentative and remote, but within a short period of time, he began to connect with Abigail. They did all sort of projects together. One included a craft, in which Mattie designed an exploding gift filled with pom poms and feathers. You can see Peter opening up this gift below, and his reaction was to wince. You can see Mattie is turning away because it is as if he almost believes this gift will explode. Abigail is simply laughing at the whole dynamic!
Left: Peter opening up the gift Mattie created for him!
Right: Ann snapped a picture of me playing the "bad guy" in this play scene. Mattie and Abigail continued a game they started weeks ago. They built a fortress out of blocks, and had all sorts of dolls and characters defending it. However, my job as the bad guy was to destroy the fortress and capture, in this case, the special rubber ducky inside of it!
It was a lovely cookout and it was very special to be able to sit outside on Ann's deck and get fresh air. Ann's parents and cousin, JP, who is visiting from Boston, were also at dinner with us. We all had a fun time chatting and it is very special to us to have Ann's family in our lives. They help normalize things not only for Mattie but for us. In a way leaving the hospital and the community I had there is devastating on many levels. Home can be very isolating, especially for Mattie. Despite all the things Ann is balancing, she seems to understand what I am going through and really wants to help us achieve whatever is best for Mattie. For that I am forever grateful for her energy, commitment, care, and support.
When we took Mattie home tonight, he was complaining of pain, nausea (most likely from all the pain meds he is on), and to top it off, he needed a central line dressing change. My least favorite part of the week! We finally got Mattie to sleep at 11:45pm, which is why at 1:20am, I am still working on the blog. As we head into Monday, we have a full day in the clinic. Mattie will be getting an infusion of MTP-PE, and as you know anything can happen with that.
We want to thank the Doane's for a very generous dinner. We will be eating it for lunch, and I know Mattie will LOVE the book, Stink and the Great Guinea Pig Express and the Legos set! Thank you for thinking of him always and for the support. We also want to thank my neighbor, JP, for dropping off Mattie's favorite pasta and pizza today! Thanks for always looking out for us JP!
I end tonight with a message from my friend, Charlie. Charlie wrote, "It sounds like although they got a late start Peter and Mattie had a full day of play. I am sure Peter is exhausted; we often forget how much energy full time play takes both physically and mentally. I am so glad you got out on Saturday to help the girls get ready and then attend the recital. It is bittersweet because these things are so infrequent instead of a regular part of your life anymore. The pictures were adorable and you clearly did a great job with the preparation. I think that while you may have a lot of the symptoms associated with depression you are not depressed; you are sleep deprived. The sadness and sometimes hopeless feelings have actual reasons (Mattie's illness and your resulting life changes) Sleep deprivation has many side effects and it mimics or temporarily brings on many problems including: irritability, memory and attention lapses, low frustration tolerance, weakened immune function, alterations in appetite, moodiness, microsleeps, cognitive impairment, hallucinations, etc. Many of these are symptoms also seen with depression. While people may think sleep deprivation is not serious, it can have serious consequences for one's physical and mental health. I hope you are able to get Mattie and yourselves back on some sort of a reasonable schedule soon."
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