Tuesday, June 30, 2009

Tuesday, June 30, 2009

Quote of the day: "The hardest part of raising children is teaching them to ride bicycles. A shaky child on a bicycle for the first time needs both support and freedom. The realization that this is what the child will always need can hit hard." ~ Sloan Wilson

Mattie had trouble going to sleep on Monday night. While I was trying to manage Mattie, I was contending with a terrible back and chest pains. I couldn't sit still, and I could tell Mattie felt bad for me, and started massaging my back with his left foot. I am sure we looked like a sight! Eventually the pains went away, and after reading several books, including, Walter the Farting Dog (don't ask, but Sally the Storylady from the hospital gave this book to Mattie, because Sally actually knows what is up Mattie's alley!), watching a video, and finally massaging his head, Mattie fell asleep after 1am. By that point, I had not much more to give.

When Sally the Storylady gave Mattie the book, she wrote a lovely message on the inside of the book cover. Sally is moving to New York, but she wanted Mattie to know that she will always remember him and that he is in her heart. Sally and Mattie did several performances in the hospital together, and she says I need to check out a You Tube link from her company that will be aired in the Fall, because it has a scene Mattie will recall from the hospital. Mattie certainly got around while at the hospital, and slowly his personality got to everyone who interacted with him. For Mattie to love you, you have to really work for it and earn it. But once you are in, you are in, and in a way it feels like you have achieved a great feat.

Mattie had a hard time waking up today, but he knew he was going to meet a new friend, Marisa. Marisa is the daughter of Denise, one of my colleagues and friends from the George Washington University. Denise and Marisa have been very supportive of Mattie throughout this year, and I am so happy Marisa wants to help me on Tuesdays each week. At first I was going to stay home with Marisa since she never played with Mattie before. However, as the morning was going on, I decided to meet up with Peter for lunch close to home. We really needed a chance to talk about a lot of things, and thanks to Marisa this was possible! Marisa and Mattie got along well, and I could tell he introduced her to his favorite thing, LEGOS! I also think for Mattie to connect with others, I sometimes need to factor myself out of the equation.

I met Peter at a local restaurant for lunch. We had a lot to catch up on, and we discussed the possibility of going away for the July 4th weekend with Ann's family. I really appreciate all of you who e-mailed me today and supported our need to get away. This meant a lot to me, because I know you can see that our level of work won't be lighter while we are away, but at least we will be doing our daily routine in a new setting, which hopefully can be a good change of pace. I also e-mailed Dr. Synder, Mattie's oncologist, and told her about my intentions of going away, and she joked with me and said she was on call this weekend, and would even be willing to make a house call to a spa or poolside. That got me to laugh! I think Dr. Synder got me to see yesterday that I need a new strategy and mind set with Mattie. The strategy is now of healing and recovery and NOT illness or Cancer. I have been entrenched in illness for 11 months now, that breaking free of this is hard, mainly because I know osteosarcoma is like a ticking time bomb, that can explode again at any point. I guess I have to compartmentalize this fear, and as parents we have to hold onto the fears and problems for our children, without letting these issues affect, pervade, and take over their lives. I wouldn't have even thought this strategy would be effective, but when I was able to talk Mattie out of feeling sick yesterday in clinic and leaving without receiving Demerol, this caught my attention. My role is NOW to create normalcy again, to motivate Mattie to allow his body to heal, and to empower him to see that as he heals, he will regain the strength he needs to use his body and live an active life. At the moment it seems like a tall order, but even today I reminded Mattie that he is cancer free and that starting this week we will be doing physical therapy with Anna. But this will be physical therapy like no other. Things are different now! We are NOT doing therapy to maintain (like we have for the past 8 months), we are doing therapy TO HEAL,TO WALK, and to help free the real Mattie that has been trapped by cancer for 11 months! Mattie listened, and did not respond, but I have no doubt things are being processed! Interestingly enough I dreamt last night (and I can assure you I rarely remember my dreams now) that Mattie was walking, and his smiling face was so vivid.

While Peter and I were having dessert, Peter looked out the window and saw our dear friend, Junko, walking by. Junko works nearby to the restaurant, and Peter flagged her down and she came in to sit with us. We had a nice time chatting, and the irony is I told Junko that I had been e-mailing her husband, Tad, back and forth this morning. Tad is on a business trip to Korea, but was thinking of Mattie. In fact, Tad was wearing the Mattie wristband in his business meetings in hopes that his colleagues would ask about it. In addition to a lovely chat with Junko, she gave me a neck and shoulder massage within the restaurant. I have no doubt people were jealous. Not many people can get away with massaging me, because well I am a private person (of course that was true pre-blog, things are a bit different now), but Junko is a special lady with magic hands (as I often tell her!). Today had me pausing. Prior to Mattie's illness, I would NEVER have thought to take a break and have a midweek lunch with Peter and now I can see all the things I missed out on for years. Not stopping to enjoy others around us is a mistake. What a lesson to learn. I certainly appreciated people and always devoted my life to assisting and listening to others, but somehow things just feel differently now. Thanks Junko for today!

After lunch, Marisa called me to let me know that Mattie missed me. They made it about two hours together, which was a great start. Somehow even two hours away helped balance my mood. After we said good-bye to Marisa, Mattie and I headed to the mall, to the Lego Store. My GOODNESS, Legos are expensive. I guess I am just clueless since Peter usually buys them, but I couldn't get over it. Needless to say, Mattie had a great time searching through the store, and he came away with some wonderful Legos to work on this weekend. When we got home this evening, Mattie started working on assembling the Lego Monorail. He is actually doing a great job independently. I am now giving him kudos and positive feedback for any independent activity he accomplishes. I snapped a picture of his work in progress! As I am typing this, Peter is building with Mattie, and they are tuning in periodically to the Red Sox game.

I would like to thank the Keefe Family for a wonderful picnic dinner. It was delicious and we loved your mom's devil egg recipe. Even Mattie ate it! Thank Tim for the wonderful homemade cookies, and Mattie loves the Scooby Doo sprinkles! I also want to thank the Morris family for the dinner they provided us on Sunday. Liz, I am sorry I got my wires crossed and thought Mary D. was delivering dinner on that night. Mattie loves the book and American flags you gave him too!

As we head into Wednesday, Mattie heads back to clinic for a blood check. This is the first night since surgery that I will not be giving Mattie IV hydration. We will check how this impacts his electrolytes tomorrow. If all is well, then we will attempt to give Mattie fluids every other night, until God willing he won't need fluids anymore at night! This will be an amazing feat! In addition, Mattie's outpatient physical therapy will begin tomorrow afternoon. Please continue to send us your positive thoughts, energy, and prayers as we try to heal and regain strength from this 11 month battle, that still isn't over.

I end tonight's posting with two messages I received today. The first message is from my friend, Charlie. Charlie wrote, "As a friend of mine used to say, "and the hits just keep coming." I know Mattie's attitude is hard to deal with but it is going to take time and patience to change it. I think if anyone suffers from depression (versus sleep deprivation) it is Mattie. That said, no one suffering from depression ever got better hiding out from the world. Medication, therapy and being active work wonders and create the endomorphins and other brain chemicals that help balance the tendency to dark thoughts. I think you need to help Mattie normalize his life as much as you can and show him that joy is still possible. It appears that he is often unwilling at first to see friends but once there can be convinced to play and participate. In Judaism we say what is most important is the doing because doing eventually creates belief. While that reference is to religious/social/charity obligations, I think it is true of life in general. Even when you don't want to, you get up and go and do and often you feel better for it. Don't let Mattie hide; be judicious in what and who you pick for social outings but don't let him isolate himself or you. In the long run that is harmful to you all."


The second message is from my mom. My mom wrote, "Mattie is having a very hard time accepting himself as he now is and who could blame him. People are always conscious of how others perceive them regardless of gender or age. Mattie is a little boy and unprepared for the effect his illness has on others and undoubtedly, he has perceived that he no longer "fits in" with his peers. Such self analysis is hard to grapple with at any age but at his young and tender age he has no built in defenses available to mitigate his unhappiness with his state of things. If differences are blatantly obvious like in Mattie's case, he is often the object of stares and gapes of strangers whenever out in public. Mattie is no dope and senses the negative attention his bald head and wheel chair attract. It is almost too much for a seven year old to bear. His functionality is also on the line especially in the presence of other children his own age, it is no wonder he becomes depressed. He can't do what they do! He can't walk, jump, or run. Those are the basics necessary for participation in the most rudimentary childhood games and he can't do any of it. He is frustrated, tired, sick at heart and feels isolated from a childhood he once knew and wants to escape from being in the presence of his peers because he is most aware of his disabilities when he sees his old friends and remembers how it used to be. It is heartbreaking but understandable. When he is made to realize that he is now in recovery mode and can feel his physical strength return gradually with every passing day, he will be motivated to use his energies to do the things he did before. With the stamina of youth he will be able to break out of the physical and mental limits that his illness imposed on him. Optimism will replace negative thinking and he will push himself to move forward as he witnesses his own progress and the return of his independence to control his body and environment without the help of others. That will not happen overnight. IT WILL TAKE TIME!! He is in his current state as the result of 3 surgeries and chemo treatments that lasted 11 months. But, if he takes even the smallest steps, whether alone or in pt, it will be a beginning. Mobility will probably happen gradually at home when he begins to move from chair to chair or bed to chair. Whatever his motivation might be, whether it is a desire to get a toy or go outside to see the garden, he will be stimulated and secure enough to take those first steps on familiar turf, especially when nobody is looking. We must trust his instincts and believe that once he "empowers" himself to move forward, he will and there will be no looking back!"