I have so much to tell all of you tonight, that I had to make a list while I was writing. Mattie began his day with a nightmare that scared him so, that he woke up. His nightmares are always of the same thing, scary people are around him and hovering over him. Funny how dreams help us process our reality. In any case, Mattie got up and today I am happy to report Mattie was able to wear his old clothes again. He no longer needs adaptive pants, and he can even work his way into a pull over shirt or polo. That is a major accomplishment. I think this transition back to regular clothes and time away from the hospital has all been very beneficial for Mattie. It is giving him a better outlook on life and his situation.
At 10:30am, Mattie had a physical therapy session with Dan. Dan brought over his Wii (which is a home video game console released by Nintendo). Basically, to me, this is beyond a video game, because it provides a virtual reality type of experience where you can move your body and pretend to be a part of the video taking place. So for example, Mattie selected bowling today. He literally was standing up, holding a device and swinging his arm as if he was throwing a ball down a bowling alley. Mattie loved the whole experience, and he played a Wii guitar as well. I was hearing all sorts of classic rock music coming from downstairs! Toward the end of the session, Dan helped Mattie outside to try to ride his bicycle with the training wheels. Mattie was able to get on the bicycle, but he did not want to move. He was too scared, and then started crying. So we brought him inside and I told him each time he tries to ride it will get easier. I can only imagine how frightening being on a bicycle is when he feel that you are not in control of your body and it movements. But we will keep at it, and Peter is encouraging him to try it again on Saturday with him.
After Dan left, we had a visit from Evelyn Holm (to help you make connections to people, Evelyn is married to Coach Dave from SSSAS). In fact, Evelyn is one of the first parents I met at SSSAS. Evelyn and Dave were our Team Mattie point people for the afternoon. Evelyn brought me a lovely lunch (I loved the butternut squash soup), which I really appreciated. Evelyn also sat with me and said a lovely prayer for Mattie and for me. It is very nice to have this spiritual support and I appreciate all of you praying for me. Because prayer for me right now is not something that comes easily. I am physically and mentally worn down. I do think that prayer is important, but I am also trying to come to terms with this fundamental question, why me/us God? Not a question that can ever be answered, but one that I continue try to come to peace with. So I appreciate Evelyn helping today bridge this spiritual gap for me.
Mattie had an appointment today at Georgetown with Dr. Matt. Matt Biel is a child psychiatrist working with us on Mattie's case. I think Matt has really helped us manage Mattie's medications and his levels of anxiety and depression now are stabilized. Mattie met with Dr. Matt today for a play therapy session. Before we got to the session, Mattie was lucky enough to have two friends join him and keep us company, Coach Dave and Liza (one of our favorite hospital volunteers). We actually met Coach Dave as we were coming through the parking lot to the building where the appointment was. All three of us got a kick out of the decor of the building, a building which really needs a complete overhaul. The psych floor had brick walls and brown shaggy carpets. I am telling you if you aren't unstable when you first visited the floor, you will definitely be after such prolonged exposure. Coach Dave was telling Mattie about his trip to Georgia where he visited a turtle rescue organization. Dave even mentioned how some of the turtles needed physical therapy from their injuries. Mattie was completely fascinated. Soon there after, Liza joined us, and then it was a real treat to watch all three of them interact with each other. Liza brought Mattie several Christmas presents. Thank you Liza for the wonderful tadpole neck pillow and matching blanket, all the playdoh, and the cute duck hat and mask. Mattie, Liza, and Dave had a blast playing with this tadpole pillow. So, picture a cute tadpole, all in green, in the hands of a six year old boy who finds potty humor thoroughly hysterical. Fortunately Liza and Dave were great sports and played along. Mattie had a blast with them, and I am happy they were there, because it gave me time to fill out consent forms, insurance forms, pick up slides and scan reports from the clinic, and then to also talk with Dr. Matt after the session was over. Thanks Dave and Liza for spending your afternoon with us. It made a big difference. The ironic part about all of this, is Dr. Matt, Coach Dave, and Liza all mentioned to me that they notice a big difference in Mattie's behavior now. That he is energized, animated, and seems happy. I see Mattie each day, and grow with his daily changes, so it was wonderful to hear the perspective of people who may not have seen him for two weeks. The power of being away from the hospital is a strong and healing force.
After the therapy session, Mattie went over to Charlotte's house. Mattie was invited to see the movie, Star Wars (which he has NEVER seen before), and to have popcorn. He was so excited about this that he even told Dr. Matt about this. Integrating Mattie back into his social world is crucial, and I so appreciate others being conscious of how difficult this may be for Mattie. Ellen (Charlotte's mom) planned the perfect activity for the kids today. It was a sedentary activity, but one which got the kids to chat with each other and enjoy their time together. It was a wonderful gift. While Mattie was watching the movie, I ran out to Target because I needed to buy a few things for Mattie before we head to NY. Thank you Ellen for giving me this opportunity, and also for bringing me back teas from Harrod's in London. I can't wait to try them, and it was so nice to be thought of while you were away.
I would say this was another great day for Mattie. When he arrived home tonight, Kathie (his occupational therapist) came over. However, Kathie wasn't coming to do OT, she came to watch Mattie for us so that Peter and I could go out to dinner. Kathie e-mailed me yesterday while I was waiting for the scan results and said that she wanted to give us this gift of time together. Normally I would have said no, because I don't like troubling people, but instead, I jumped at the opportunity. I know Mattie is comfortable with Kathie and I also know that Peter and I deserve a meal where we are not thoroughly stressed out. When Kathie arrived, Mattie was thrilled and very excited. He had no problem saying good bye to us. Peter and I had a lovely dinner together and chatted about everything and caught up on a month's worth of information. While at dinner Peter had me laughing hysterically, so much so the table next to me was watching us. Peter and I are like night and day in the morning, in terms of our routines. I can't move an inch without first taking a hot shower, and Peter can't stand the thought of showering first without having coffee. Peter was up again until 4am working on a proposal for work, and only got about two hours of sleep. Because he was running late this morning, he proceeded to shower first before getting coffee. BAD, BAD idea! The way he described his shower this morning almost had me choking, that is how much I was laughing. He sounded dazed, confused, and with total blurry vision in the shower. In fact, I think he may have fallen asleep in the shower at one point. The moral of the story here is don't change something that works for you. If may not sound funny to you, but trust me, it could have been a scene from a sitcom episode.
When we got home, Mattie was still having a great time with Kathie. Kathie told me that Mattie was non-stop talking. He wanted to show her all his toys, puzzles, trains, and even his air craft carrier. I think he was just happy to have this time with Kathie. It was very special to see Mattie connecting with someone other than us. Thank you Kathie for this wonderful gift and for having such a special connection with Mattie. If you could have seen their initial sessions together years ago, I wonder if Kathie would have ever thought that their relationship today would be possible?
There is something I can't get out of my mind tonight. I went to the clinic today to pick up Mattie's paperwork, slides, and scan results to take to Sloan Kettering. While I was there, I bumped into a mom I had met in September. Her son has a rare form of cancer called neuroblastoma. I was surprised to see her in clinic because her son completed treatment. Well it turns out after several months away with no evidence of disease, the cancer has returned in full force. I can't tell you the look of despair, pain, and heartache on this mom's face. In fact, even the son understood what was going on, and he is only 6. This little boy was diagnosed when he was two. This boy knows the inner workings of the hospital and he knows that he has another fight ahead of him. When this mom told me what was going on, I couldn't help but experience great sadness for her and to empathize with her situation. There for the grace of God could go Mattie. I have tried to shake this image today, but it keeps popping up. The one thing I have come to understand it that as a cancer community when one of you is down, we are all down. It just magnifies the level of pain over this whole process. When I first met this little boy in clinic he was clearly not himself. He was angry, hostile, and closed off. When I met him today, he was delightful, charming, warm, and energetic (he even gave me a gift before he left made out of clay). It is heart breaking to know that this energy and life will once again be striped from this little fellow. The one positive of the clinic visit, and believe me I needed a major positive, was I bumped into Jenny.
Jenny has been working on getting us Lion King tickets for the broadway show while we are in NY. Tonight I received an e-mail from Jenny confirming the tickets. Jenny wrote, "Jessica Moore from the DC office of the Walt Disney Company was able to use her unparalleled super-sweet-talking skills to get you all 6 comped tickets to The Lion King on Tuesday evening!!" Thank you Jenny (also thank you Jessica and Mr. Padden!) for making this happen. I told Jenny that my parents used to take me to broadway musicals all the time as a child. Which is probably why I LOVE and relate many things to music. However, I have never introduced Mattie to musicals before, and I feel Jenny is helping me to carry on the family tradition. Thank you Jenny for all your support and helping us to make this a memorable trip.
I received two e-mails today that I would like to share with you. The first one is from my good friend, Lisa. Lisa and I met in graduate school, and though she no longer lives nearby, she e-mails me all the time with supportive and hopeful messages which are greatly appreciated. Lisa wrote, "Yesterday and today, I celebrate for you, Mattie, and Peter. This IS wonderful news. But when I read your blog last night after class I read two things that I am celebrating. One, is the outcome of yesterday's scan; and two, the comment by the docs that the medicine--figuratively speaking--over the past two weeks that YOU and PETER are giving Mattie is working. Out of everything you have ever written on the blog, that is the most magnificent news, i.e., that an outsider can see progress in Mattie not only in his physical condition but in his psychological stance. As you know BOTH are equally important. In a nutshell, what it said to me is you and Peter are helping Mattie have a quality of life and hardiness (and some joy) as he and you all move through this "getting better" period. Vicki THAT comment from the doctor is a huge point that I hope you too will celebrate along with the other outcomes from yesterday."
When talking with Vicki during the holidays and then reading and re-reading some of her entries on the blog, it is clear that Vicki, Pete and Mattie have been provided with some wonderful lunches and dinners by so many of you. Vicki speaks so lovingly of the delicious meals - the treasured recipes, scrumptious sweet treats, elegant entrees, yummy breads and lots of delectable chocolate items. It dawned on me that it would be wonderful to gather all of these recipes plus some of the stories and quotes in a book to share with each other. It would be a real treasure for all of us and something that we will all cherish. More importantly, I'd like it to be a fundraising item as part of the Walk in the spring that Liz Chiaramonte is organizing.
Right now, I can envision it as:
Sharing Mattie's Menus
A treasury of recipes, sweet thoughts & memorable quotes
I think that it could be produced for a nominal amount of money by designing it as a half size copy with the pages copied with a hard cover with a spiral binding. I'm going to look into possible printers, copiers and options available.
If you would like to participate or help in any way, please contact me at email@example.com. If you would like to share one of your recipes of a dish or item that you provided to the Browns or a thought or quote that you shared with them, please forward it to my e-mail address above. I plan to have an organizational meeting at the end of January and will be working closely with Liz. Thanks for your support! Liza May