Quote of the day:
"We never know the love of our parents for us till we have become parents." ~Henry Ward Beecher
While I was home resting on saturday night, Peter had his hands full in the hospital. Mattie woke up at 4:30am, and was WIDE AWAKE. Mattie was chatty, wanted to play, and was ready to start the day. I am not sure how Peter handled this, I would have had a fit. Peter was able to convince Mattie to stay in bed and watch TV. Fortunately the PICU finally changed their cable network, to include 24 hour children's TV, which helps tremendously. So Mattie watched TV through the wee hours of the morning. When Sarah Marshall, Mattie's nurse, came in to take his vitals at 5am, Mattie invited her in and was lively and animated. Apparently Peter tells me that Sarah Marshall couldn't get over Mattie, and she thought he was an absolute riot. Like the life of the party!
So Peter's day started early! With each day that Mattie remains in the hospital he gets more and more bored, restless, and stir crazy in his room. No amount of toys and activities can keep him busy, and this gets very challenging to manage. So I have no doubt Peter worked super hard today. I spent the morning and part of the afternoon at home. I had a lot of things to catch up on from laundry to sorting through some things I wanted to donate to Linda for the childlife room. I felt I was very productive, but while away my heart is always in the PICU. This afternoon, Ann, Dr. Bob, and their three children came over. Bob has a wonderful camera, and he generously offered to take a professional quality digital picture of Mattie's "Mr. Sun" painting. I needed this quality picture in order to create Mattie's walk-a-thon t-shirt design, as well as for the creation of an osteosarcoma stamp. As you all know Bob is Mattie's surgeon. I wonder how many surgeons you know make house calls, and also take pictures in order to generate fundraising items? I would gather NOT many! When Ann came over today, she brought me two large shopping bags full of valentine's day cards and cookies for Mattie. We want to thank the Junior Girl Scouts Troop at SSSAS (Troop 168) for giving Mattie two cases of girl scout cookies. That was so thoughtful and generous of you. Mattie loves your cookies!
When I arrived at the hospital, I was so happy to see Erin, a HEM/ONC nurse. Peter called me and let me know that Erin was back after a two month leave. Erin was one of the first nurses I got to know. She is a pure delight and so empathetic. There were times during the initial stages of Mattie's treatment when I looked shell shocked and Erin would just hug me. One time she even massaged my neck. Erin is also the person who taught me how to care for Mattie's central line. She did an excellent job, because thank God Mattie has yet to have a central line infection! When Erin told me she was going on leave, I was saddened by this. When I saw her today I gave her a big hug and also gave her the Christmas present I saved for her. I am sure being away on travel to such places as Hawaii and then coming back to work wasn't easy for her today, but Brandon (Mattie's big buddy) and I were thrilled.
When I entered Mattie's room this afternoon, he gave me a big greeting, and was very excited to see ALL of his valentine's day cards and goodies. At one point he was surrounded by valentine's! We read each beautiful card together. All four first grade classes at SSSAS gave Mattie cards and Debbie (Mattie's art teacher) also had her students design beautiful heart cards with special messages inside for Mattie. These cards put a special smile on his face. He felt remembered! After all, never forget the profound level of isolation Mattie lives. He doesn't do what other children do on a regular basis, and in these times of isolation it is easy to feel forgotten! These cards, may sound like a simple gesture, but they however are wonderful connections to the outside world. The world of normalcy and other children. I took a picture of Mattie with his cards, and one of his favorite items in the valentine's day box was this HUGE lollipop, from his buddy Missy. This lollipop was a hit. Mattie couldn't get over how large the lollipop was, and he even called Erin in to check out the lollipop. Mattie gave Erin a regular lollipop for valentine's day, and he loves comparing the size of her pop versus his!
Then Mattie decided to hop into his wheelchair and show off his lollipop to Brandon and the PICU staff. Mattie was simply thrilled. He had the residents touch the lollipop and also guess what flavor it was. He was so animated, and it is a moment in time I won't forget. Because for that instance, all I could hear was a child being a child! With childlike joy and laughter. Despite of course the simple fact that I was pushing his wheelchair and his gigantic IV pole, which always grounds me back to Mattie's disease. Mattie and I then went out into the hallway and were headed to feed Linda's fish. Mattie is adamant about feeding these fish on the weekends. While in the hallways we bumped into Brandon's mom, Toni. Toni walked with us and we got a chance to talk. Brandon is still in the hospital, and continues to be in great pain. It is ironic that Brandon came in for an appendectomy and he lands up being in more pain from this routine surgery than any of his chemo infusions he had. We pray that Brandon feels better soon.
WhenI arrived at the hospital, I sent Peter home. He needed a major break, and I played with Mattie for several hours. We did all sorts of activities, but landed up playing with his lego pirate ship. Mattie was playing with the parrot lego that was attached to the lego ship. Mattie literally brought this parrot to life. What I found fascinating was at one point, the parrot died. I wasn't sure how that actually happened in his story, but Mattie hid the parrot behind his back and said that something happened to the parrot and caused it to died. So I decided to play along. The lego characters I was playing with became sad and talked about how they missed their parrot friend. Then all of a sudden Mattie started making the sounds of the parrot. I asked him what was happening, and he told me the spirit of the parrot was coming back to be with his friends so they wouldn't be alone. I was taken a back by this whole scenario of play. It seemed quite deep, but I see on some level Mattie is trying to process what happens to all of us once our bodies die.
Peter came back this evening and while Peter and I were talking with Erin in Mattie's room, Mattie fell asleep right next to me. So Mattie was out by 6:30pm. I feel for Peter, because this has the potential to mean that Mattie will be up very early. Peter gave me another night at home, which is a total gift. I am so wiped out that even two nights at home I am not sure will make that much of a difference. We want to thank the Wendt family for a wonderful gift certificate tonight to take out taxi. I thought the Wendt's provided us with dinner on friday night, but I got my days all confused. Thank you Donna, my cousin who lives in Boston, for a lovely dinner on friday and supporting us from afar.
I headed home tonight with a mission. My mission was to bake cupcakes and mini cupcakes for Mattie. He requested vanilla cupcakes with pink colored frosting. So our home smells of cupcakes, and while I am baking, I am also listening to music and typing this blog. Listening to music is something that I love to do, but do not get much of an opportunity to do this with Mattie around. He rarely likes noises of any kind around him. So even this freedom to do what I want tonight in my own home is a luxury.
I want to share an e-mail I received today from Charlie. Charlie wrote, "As I read Saturday's blog and also the comments I thought how true it was that in times of trouble we turn to our parents, especially our mother. I remember not understanding how much my mother loved me until I first held my son in my arms and then I was flooded with the knowledge of what it is to be a mother and to love unconditionally. I remember thinking I will do everything in my power to protect this child. I am so grateful that I have not been called upon to do what you are doing, and I am so in awe of how well you do it day after day. I know that when Mattie holds his own little one in his arms (may it come to pass, B"H), he will know everything that you and Pete have done for him in a way that surpasses our ability to put it into words. I am glad that yesterday was a better day, that you were able to get some rest and I hope that this day will be a good one for Mattie and you. (B"H is the Jewish "shorthand" for G-d bless or G-d's blessing.)"
I end tonight with two beautiful quotes about FAITH that I received from Louise (a senior at SSSAS, and a Mattie buddy). Under such trying times it is easy to want to give up faith and hope, but then I receive a beautiful message like this that awakens them for me!
“Faith is to believe what you do not see; the reward of this faith is to see what you believe.” ~Saint Augustine"
"What is faith? it is the confident assurance that what we hope for is going to happen. it is the evidence of things we cannot yet see." ~ hebrews 11:11
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