Friday, January 23, 2009

Friday, January 23, 2009




Quote of the day: "Every gift which is given, even though it maybe small, is in reality great, if it is given with affection." Pindar, Greek lyric poet 518-446


Charlie wrote this to me today, "Yesterday’s blog brought this to mind when you wrote about the gifts from Joy and how you gave one to one of your favorite nurses. I was struck by how much thought went into the selection of those pieces and then in turn how much went into deciding who to give the nursing piece. It was clear how right both decisions were-the one to give you the mother of sons’ statue and yours to give Tricia the nursing one. All of that reminded me of all the gifts of food, time, affection, etc given by the volunteers on Mattie’s behalf that I read about every day in the blog. I’ve heard you say over and over how much those mean to you and how much you appreciate the time and effort of the volunteers, staff, friends, and family who pitch in to help. Giving is a two way street and when the gift, whatever it might be is given from the heart, the giver receives as much joy as the person who receives it."



Before I tell you about our day, I imagine some of you may be wondering who is Charlie? As you know Charlie writes me thoughts almost each day. I have told you in previous blogs that she is a retired Lieutenant Colonel from the Air Force, a former radiology technician, and now a professional school counselor in Virginia. But how do I know Charlie? I know Charlie because she was one of my first students who I taught at the George Washington University's Alexandria, VA campus. I taught Charlie during my initial years of teaching, prior to getting my doctorate degree. The beauty of teaching at GW I have found is that I have had the opportunity to work closely with my students and have gotten to know them well. In fact, I learn a great deal from my students and they challenge me to continue growing, learning about the field, and developing more effective teaching strategies. Charlie was a student who I gained a lot from, and after we had classes together, we developed a friendship. Charlie's messages to me are a gift each day, which is why I share them with you and hope you enjoy them too.





Today's quote captures the essence of what I would like to reflect on this week. Gifts! Peter and I have and continue to receive many gifts from the heart. Each of our faithful blog readers and members of Team Mattie continue to provide us with gifts that are too priceless to measure. The gift of caring, time, compassion, and of course tangible gifts such as toys, goodies, cards, e-mails, phone calls, and food. I continue to be amazed by the outpouring of gifts we receive each day! In fact, despite being in one of the worst situations I could ever imagine, I find myself surrounded by a world I guess I was too closed off to experience before Mattie got sick. I am not sure what I was expecting to happen once Mattie developed cancer, maybe the world around me to shut down, off, and disappear (which has happened to most of the caregivers I have ever worked with or interviewed). But instead, quite the opposite is happening. I am connecting with more people now than ever before, and I find others too are connecting over this issue. That is profound to experience and observer.

What amazes me as well, is I have Mattie's nurses giving me/us gifts as well. Not only the gift of their compassion and understanding, but tangible gifts as well. Last night, Melba (one of Mattie's favorite night nurses) brought Mattie fresh mozzarella cheese. She knows how much he LOVES it, in fact she observed that I left the hospital the other night to track down fresh cheese on the Georgetown campus. I won't tell you the scene I made at the restaurant on campus to get just the fresh cheese. Melba heard this story, and took it upon herself to bring in a whole ball of fresh cheese for Mattie the next day. Totally unsolicited, but she got sheer joy over watching him eat it. Which gets to Charlie's message, that the gift giver gets just as much joy giving the gift as the person receiving it. Today, before we were discharged from the hospital, Miki (an outstanding Hem/Onc nurse) gave us a gift. She told me about the Japanese tradition called Hatsumode. Which in essence is the first shrine visit of the New Year in Japan. Many people visit on the first, second, or third day of the year as most are off work on those days. Generally, wishes for the new year are made during the visit. Miki did visit a shrine, and she prayed for courage, hope, recovery, and protection from illness. She brought me back a trinket that is symbolic of this. I was truly touched. She is providing us with outstanding service, and we should be giving her gifts, but instead she is bring me back a gift when she visited her family over the holidays. So this week to me is a week of reflecting on the beauty of gifts, friendship, and love. I have also observed that many of the nurses and staff are wearing the hope necklaces and Mattie wristbands we gave them for Christmas. Each time I see them wearing these items, I feel like it only emphasizes their commitment to seeing Mattie recover.

Peter and I packed up Mattie's room last night in preparation of being discharged this morning. Peter loaded up our car this morning before he left the hospital and he even bought Mattie and I breakfast to start off our long day on the right note. Peter was willing to go to work a little later this morning to take us home, but I was determined not to miss Mattie's 10am physical therapy appointment. Peter then offered to pick us up at lunch time, but I figured that it would be hard for him to leave midday to come to Georgetown. The packing up and moving out process is never easy, but it makes it easier to do it with Peter since he takes on the hard part of carrying all the bag and boxes to the car. When he takes these things ahead of time, it lightens my load, so that I only have to worry about Mattie, the wheelchair, and a few bags.

This morning started out challenging and ended on an amazing note. I will describe it, but I want the picture to speak for itself first! The picture shows Mattie walking normally, straight on, not doing his side ways crab shuffle. You can see Anna (Mattie's PT) making the victory sign in the picture, because after trying to coax him to do this, he finally tried it!

Anna brought to the PICU two different walkers today. She told Mattie he got to test drive them to see which one worked better for him. At first he seemed disinterested or scared in pursuing therapy today. So instead he buried himself in building with knex. Anna and Linda continued to encourage Mattie to try to stand and use the walker. They designed clever play schemes into the whole therapy session today, to try to encourage him to engage and move his body. At one point I told Mattie straight on that he had to listen to Anna. That if he did not start using his knee and straightening his leg, that Dr. Bob was going to put a cast on his leg. Yes it was a threat (a real threat, I did not make it up!), but none the less he had to understand that he has a choice. The choice is either to work slowly on moving and working with Anna, or take a step backwards and get another leg cast.

Mattie tried the standard walker. The walker that stands in front of the patient. But that did not work for Mattie. Anna explained the problem to me. Mattie's right knee is buckling under him because he hasn't used or exercised it much after surgery. So he needs to strengthen it, but he is in essence scared to do this. Because he has a weak right knee, he is unable to balance and put pressure on that right foot, in order for him to lift his left foot off the floor to take a step. The left foot is basically planted and sucked to the ground. Which is what leads to his invention of the sideways crab crawl. I felt like today I had a better understanding of the problem. Anna then gave Mattie the opportunity to use a posterior walker. Linda and Anna told him this is just like his wheelchair, supporting him from behind. I don't know, but something clicked. The next thing I knew he was walking straight. His left leg was clopping along, but it was such an improvement over the crab shuffle. I couldn't believe my eyes. We were all so excited for him, which inspired him more. He then started to move faster. He caught the attention of almost everyone in the PICU.... nurses, doctors, and residents! I wish I took a picture of the crowd, but I was too busy watching Mattie. Mattie made great progress with Anna the last two days, and it is my hope that he will build upon this next week in the hospital. I find that there are some things Mattie allows me to help him with, but his physical rehabilitation is not one of them. I don't take it personally, since I got over this insecurity early in his life when I had to turn to speech therapists and Kathie (his OT) for help. We just can't be everything to our children, despite how much we would like to try.

At noon today, Linda helped Mattie I downstairs to the ER entrance where we met Liza May (a SSSAS upper school mom). Liza was nice enough to volunteer to pick us up and take us home today. This was wonderful because Mattie really wanted to leave right after PT. Liza got us safely home and helped us out. Thanks Liza!

We had a quiet afternoon, of playing with a large box of knex that Linda gave Mattie. We also played trains and had a visit from JJ (our resident Jack Russell Terrier). When Peter came home tonight, he helped bring up items from our car for us to unpack from the hospital. But Mattie was very focused on showing Peter his new walking abilities. Peter had heard about this earlier in the day when we talked by phone, but Mattie wanted to surprise his dad, and Peter hammed it up! When Peter walked in the door tonight, he literally bumped into the walker and asked what this was. He joked that it was a good place to hang his jacket, and Mattie laughed.

We had a wonderful homecooked meal tonight thanks to the Kathy Brown and her family (a RCC mom and her family). Kathy made us homemade pumpkin soup, which is one of my favorites. Mattie ate pumpkin soup and loved it, he ate Kathy's homemade chicken, and a plate of cheese. Now he is eating ice cream. So Mattie had a good dinner. Thank you Kathy for such a nice meal and for the brownies as well. I was disappointed to hear that the Dairy Godmother is on vacation for a month, because Mattie still talks about the amazing custard you brought him last time!

As I write the blog tonight, Peter and Mattie are watching the movie, Cars together. This is one of their favorite movies that they like to watch. In fact, they both can quote parts of the movie. It is a riot to hear. Mattie has a full social weekend, with two birthday parties to attend tomorrow. It is so nice that Mattie continues to be invited to parties, and included in his former life outside the hospital. Of course as a parent of a child with cancer, we would like to shelter Mattie from disappointment because you just never know how Mattie will react around his friends. But Peter and I will be there to support him, and help him to embrace these good times. As I sign off for the evening, Peter and I want to thank Joan Holden (SSSAS Head of School) for calling us today and for her continued support, energy, and dedication to our family. We are indeed blessed for all these gifts!