Quote of the day: "The whole idea of compassion is based on a keen awareness of the interdependence of all these living beings, which are all part of one another, and all involved in one another." ~ Thomas Merton
Before I tell you about Mattie's day, I received some very sad news tonight from one of my students. I learned that my former student, Pam, died on Sunday. We are all so devastated by this news. Pam developed an infection, which literally took over her body rapidly. Pam was a very sensitive, loving, sincere, and bright individual. In fact, once she was no longer my student we would occasionally meet for coffee while Mattie was in Kindergarten last year. Pam also visited Mattie in the hospital several times and she would write to me periodically to support me in my caregiver role. This year has left me pausing a great deal because I do not understand the medical tragedies I am seeing and deeply experiencing. So this evening, I write with a heavy heart because in my opinion the world lost a special individual.
Mattie had a TERRIBLE night of sleep on Monday. He couldn't fall asleep, so he decided to pull out his Leapster for a while. That was a first! Mattie seems opposed to electronic media as forms of entertainment for the most part. However, once he fell asleep it seemed like he was up almost on the hour. He couldn't get comfortable, he had to go to the bathroom, and worst of all, he was frightened and scared. When I asked him what he was frightened and scared about he told me he couldn't say. I wasn't sure if that meant he did not know, or he did not want to tell me. I followed up with him this morning about his feelings, and he had no recollection of waking up during the night.
Despite going to bed late, Mattie was up at 7:30am and was ready to go. This is the beauty of a seven year old body, but I wasn't as perky. I tried to sleep another half an hour while he continued to play with his Leapster, but that did not last long.
When Mattie went downstairs today, he pulled out an educational tool that Charlotte gave him. It basically helps Mattie learn about basic letters and words, simple addition, and matching shapes. I was thrilled to see Mattie pull this out, and he and I played with it for over an hour!
Later in the day, Mattie and I were fortunate enough to have a visit from Alison. Alison was our mid-day helper today, and Mattie was excited about Alison's visit. I think Mattie gets a kick out of Alison's sense of humor. Alison is a SSSAS mom, and Mattie and Alison's son Paul were classmates last year in Kindergarten. The irony is Alison and I never had the opportunity to chat with each other much last year. We have certainly made up for lost time this year. Alison continues to be extremely supportive of my whole family, and to put things into context, Alison is our Team Mattie Communications coordinator, and also manages Mattie's Fund. Alison brought Mattie his favorite frosted cookies today, which he requested. He can't get enough of these cookies. Which is fine with me, I welcome sugar and fat! Quite a commentary from a mom about her child's diet, no? Alison also brought Mattie donuts, a wonderful party goodie bag, and a cute little wind up bunny on a bicycle that is carrying a load of jelly beans. Thank you Alison for the soup and for the grocery store items.
Mattie has a way of coming up with some very creative ways of playing. Mattie took out all his wind up animals, Alison's bunny, Linda's pooping cat toy, Alison's chicken that lays eggs that she gave him during her last visit, Tanja's gross frog, Tamra's dinosaur Easter egg, and all of Ann's Easter basket items and created a whole play scenario with them. Mattie also used the boat he made in clinic on Monday, Easter grass from his Easter basket, Lego people, and the list goes on. But the basic premise of the story was there were three bunnies. These bunnies came upon a junk pile of toys, but it wasn't an ordinary junk pile. This pile had an inhabitant, a scary pink Easter egg that transformed itself into a dinosaur. The bunnies were terrified of the dinosaur. So the entire play centered around how to escape from this pink dinosaur, and believe me it became interesting. The bunnies escaped by boat and then by plane. In the midst of this, the bunnies were also aided by a coast guard Lego man, and two army parachuters. Alison played one army man, the goofy one, and I played the serious one. Needless to say, the dialogue between Alison's army man and mine caused Mattie to laugh so hard he got the hiccups. Alison and I played for two straight hours without breaking! I think Mattie enjoyed himself, and loved the opportunity to play with someone other than myself.
After Alison left, Mattie wanted to go for a walk down to the Washington Mall. So I packed up some food for him to eat, and brought an umbrella and a blanket, because I sensed a change in weather approaching. As I was pushing Mattie's wheelchair to the Mall, I realized just how tired I was. In fact, I am so sleep deprived and physically exhausted, that expending any unnecessary energy is not wise. Pushing a wheelchair down and up hills practically knocked me out. As I was midway, I thought how on earth am I going to make it to the Mall and home again? At one point it was so concerned about this, I pictured myself calling Peter from my cell phone. However, I managed, but it look a lot of mental fortitude to get me through the walk. You would think by now, that I would be used to seeing people stare at Mattie as we are out on the street walking. But sadly, NO, I haven't gotten used to it. It is hard to have a thick skin and not let other people's actions affect you when you are in such a fragile state yourself. I think dealing with cancer is complicated enough, but Mattie sticks out even more because he is in a wheelchair. Top it off, in the summer months, Mattie's surgery scars will be very visible. So this should prove to be another interesting and humbling life lesson. As any parent knows, when something happens to your child (a bad day at school, trouble making friends at school, etc..) it is hard not to take this personally and in some ways it pains you even more than if the issue where happening to you directly. Needless to say, Peter and I are experiencing pain this year that is indescribable.
Mattie and I did stop for a while once we got to the Mall and watched the birds, squirrels, and people. Mattie also ate crackers and cheese while we were resting. There were a few squirrels that made us laugh. I do not like squirrels at all, and several I felt were stalking us for food. There was one squirrel in particular who was having a staring contest with Mattie and I. I had to take a picture of this character. You can see the squirrel just clinging to the bark of the tree, and not moving! Mattie and I also got the chance to observe a Mother duck and her two ducklings today. Mattie loves the ducklings, and the these two ducklings caught the attention of everyone passing by.
When Mattie and I got home from our walk, we played with his race cars, and had several races on the living room floor until it was time for dinner. We want to thank the Coker family for a very generous and thoughtful dinner. I can't thank you enough for the beautiful strawberries and chocolate cake. That made my evening.
Mattie seems played out tonight and a bit tired. He is complaining that his left arm hurts him, and I think he may have bumped it as he moved himself out of his wheelchair today. Typically I transfer him all the time, but today I apparently did not move fast enough for him, so he took it upon himself to move. So something else to keep a watch out for.
I would like to end today's posting with two messages I received today. The first message is from my friend Charlie. Charlie wrote, "Well, Monday was exciting both for the friends you got to see and for Mattie's unusual (for him) reaction to the MTP-PE. I am glad he had a relatively rapid recovery and is back home. I loved Charlotte's comment about Mattie's cancer being "so unfair;" this is something adults think but most will not say out loud. Children can be so much more observant, empathetic and honest than we give them credit for. That's why we are always so surprised when they give us these sorts of behaviors. But children learn by what they see other people do, and you and Peter and the SSSAS community are certainly an example of the kind of adults we want all children to grow up to be. I would like to echo your friend Nancy's comment from Sunday's blog; Vicki, your blog is a gift to all of us who read it. It reminds us to stay in the present, to be grateful for all gifts large and small and to take nothing for granted. It is a daily reminder for me to pray, to reflect and to remember to be patient; thank you for the gift of emotional and spiritual growth."
The second message is from friend Carolyn. Carolyn is a RCC mom and friend, and Mattie and her daughter, Ellie were in the same preschool class together. Carolyn wrote, "I know I have said this before – but each day when I read the blog I am in even more amazement of your stamina, your commitment, your motherly love – I could go on and on. You are truly an amazing woman and Mattie is so lucky to have you as his Mom. God knew what he was doing when he gave you Mattie. It is clear to me that God’s plan was for you to use this nightmare of a year to bring greater awareness to so many. Although it is a living hell for you, you find the time to advocate for others, share such valuable life lessons with us, and show so much compassion and caring for everyone around you. Wow!"
No comments:
Post a Comment