Friday, September 19, 2008

Friday, September 19, 2008

Last night before we settled down for the evening I mentioned that we had a visit from Meghan, one of Mattie's residents. Meghan talked with us about Ativan, and it was a very helpful dialogue. A little later Meghan presented us with a piece of paper. I expected the piece of paper to be medical related, but in fact it was not. Meghan observed two weeks ago that Mattie loves dinosaurs and she enjoyed watching him unearth pretend dino bones from some clay. Well the paper Meghan handed us was the name of a paleontologist from the Smithsonian. She called all over town looking for a professional who would be willing to talk with Mattie about dinosaurs, as well as give him a personal tour of the Natural History Museum. I was downright shocked. Shocked on so many levels. Shocked because here is a young lady that is TRULY busy. A medical resident's life is very challenging, and I can see she and others work around the clock. So the fact that she took the time to observe Mattie from a holistic side truly impressed me, and then she took the initiative to contact people all over DC. I don't know about you, but this has the markings of a great doctor to me. In fact, I told her all medical doctors should be as concerned about Mattie's educational and "human" side as she is, frankly the medical professional would be a better and stronger profession. Why we continue to separate out the mind, body, and spirit is so beyond me. When one is failing, so is everything else. You have to nuture the mind and spirit, because it can only help with the recovery process of the body. This is what is lacking in Mattie's care at the moment, there are no organized group activities in the hospital for Mattie. This may sound trite, but it isn't. When you take school and social structure away from a child, the results in my book aren't positive. I think Linda and her childlife team are outstanding, but they need the backing of the hospital and the support to really be able to accomplish what I think other hospitals are already doing. But I digress.

Today seemed like a blur to me. Mattie woke up with nausea and had a very slow morning. After dry heaving for hours, he finally took a morning nap. Later on in the morning he had a visit from his new buddy, Ann. Ann brought Mattie donuts, a joke book (very appreciated!), and a wonderful frog that when exposed to water gets transformed into a prince. This science experiment took Mattie's mind off his pains for a while, which was a wonderful thing! Which gets back to my previous point made above, the mind and spirit must be taken care of, otherwise, the only thing else to focus upon is sickness and pain. Which isn't productive! Thank you Ann for giving me a few minutes to get outside and have a change of scenery. I plan on enjoying your spinach dip tonight as well! Ann, as many of you have observed, is an incredible team motivator, and I would be remiss to not mention this. Ann has had cancer touch and take away her brother's life, and yet she finds the inner strength to come to the hospital, energized, willing to help, and hopeful about the future. Ann sent me a very meaningful e-mail today, which helped me see I am not alone and that she could relate to some of the feelings I am expressing.

Thank you Sylvia for coming today and dropping off dinner and lending support. It is nice to know that folks at GW are following Mattie's situation. Mattie had a full house today. My parents were here, Linda came back from vacation (we missed her!), Whitney (Linda's intern) visited, as did Jessie (our art therapist buddy), and Denise (our social worker). I also had a visit from Mattie's nutritionalist, Ellen. Poor Ellen, I practically snapped her head off when she walked in the room today. I think I build up a sense of anger during the day, especially after spending 5 days in the hospital, with people coming in and out of our room. They all mean well, and Mattie needs their support, but none the less, it is hard. But like all of us who are parents know, you put up with a lot of stuff to help your children and do what is best for them. However, when Ellen showed up, I was at my boiling point. I eventually calmed down Mattie who was vomiting and then went out in the hallway to talk with her. She was very patient and understanding and is really working on giving me ideas to help Mattie gain or stabilize his weight.

As many of you know tomorrow (saturday) is Mattie's carwash fundraiser. I can't get over the number of people volunteering and planning on attending. Peter and I are going to try and be there, but Mattie will still be in the hospital, and it may not be feasible for us to be there. But if not, then we will be there in spirit, and we can't thank all of you enough for supporting us. I hope you know whether we are there in person or not, we are thankful for all you are doing! Ann, let me know today that a check for $500 was sent to her for Mattie. The check came from a person in Hawaii, a person I do not even know. Simply amazing and we are truly grateful.

On the electronic front, thank you Allison F. and Lesley C. for the e-mail and Emily W. and Kim for the e-cards. I would like to end tonight with two e-mails I received today. One was from a man, I have never met. An RCC mom, Danelle, sent out a listserv message to her community about Mattie's carwash, and her neighbor, Wayne Hulehan responded. Wayne lost his wife to cancer, and he wrote to let me know that he plans on attending the carwash tomorrow and also that he just lit a candle in Mattie's honor at home and at the Calvary UMC. He also added Mattie to his church's prayer list in Rosemont, VA. What can you say to such a beautiful act of kindness? Other than thank you, and I know that when cancer touches your life, it seems to immediately bond you with anyone else impacted by this disease. The second e-mail I received was from Lesley Colognesi, a friend of my sister-in-law, Lisa. Again, Lesley and I have never met, but she is following Mattie's blog and wrote me a very meaningful e-mail today. I am sharing a few of her thoughts with you here. Lesley wrote, "While your students are not in formal classes with you this year, your lessons have broader stokes and the impact of your work goes deeper. I thank you for allowing strangers to visit Mattie's world daily. You have taught many how to parent well, love deeply and openly, and face a challenge head on." Thank you Lesley, words are powerful, and provide great comfort during this time.

It is funny, I have this song running over and over in my mind the past couple of weeks, and thought.... well this is just silly. But then I saw this song quoted at the bottom of Wayne H's e-mail today, and I thought.... YES it is very meaningful, and it is the only way I can think of to survive the day to day struggles of being a mom of a child with cancer. Thank you Wayne, it helped me to verbalize this!

Oh Dear Lord
Three things I pray
To see thee more clearly
Love thee more dearly
Follow thee more nearly
Day by day