Quote of the day (thanks Lisa, my sister-in-law):
"When you are in hell, keep going. Seems to mirror your approach!" ~ Winston Churchill
Today was what I would call a great day! Wow, did I actually say that?! It clearly must be someone else writing this blog, or my alter ego. I jest, it is me, and I am happy that I haven't lost the ability to still assess a good day and to also be able to enjoy aspects of my life. This weekend in a way was magical. Not that Mattie's illness did not weigh on my mind or Peter's mind, because it always does. We live and breathe cancer each day. Mattie and I spent the time together on the first floor of our home on saturday night. Mattie got to bed after 12:30am. I stayed up to work on the blog and and went to bed after 2am. Mattie got up at 6am to go to the bathroom and at that time, I flushed out his central lines since his IV hydration was complete. It was hard for Mattie to get back to sleep at that time, so he was basically up!
When Mattie woke up his first question of course was, "Did the tooth fairy come? Did she leave me something?" Of course the tooth fairy did not disappoint. She left a string of Christmas lights all wrapped up with a big gold bow. Mattie added the lights to his Christmas village display that he has created. As you can see there is a lot going on in this display, a Christmas train, a lego tunnel, a remote control car, a poinsettia, wooden animals, his handmade nativity scene, and of coursem Mattie's favorite thing now, Wall-E. So the tooth fairy made Mattie very happy this morning.
Mattie was scheduled to have occupational therapy today with Kathie. But Kathie called me and was sick. Kathie and I had a nice chat on the phone and Mattie looks forward to seeing Kathie soon when she gets better. But I thought Kathie's call spoke volumes about her. She is sensitive to Mattie being neutropenic, and did not want to expose him to any germs. Thanks Kathie! With that in mind, I also called Dr. Myers today. He is part of the oncology practice at Georgetown. We wanted to take Mattie to see some Christmas displays today, and we were contemplating Union Station or the National Botantical Gardens (which is a large and magnificent indoor structure). Something told me today to check with Dr. Myers before doing this. He did not think it was a good idea to take Mattie into such a large public place where he could be around others who are sick. So Dr. Myers suggested going to see the Nation's Christmas tree and display. It was actually a fabulous idea and all of us were excited by this. Today wasn't a frigid day, which made this outdoor adventure bearable.
Before we headed to the Nation's Mall, Mattie had a visit from Carrie and her amazing standard poodle, Jax. Jax is a show dog as well as very therapeutic. I called our front desk today to have them approve Carrie's visit since technically dogs are not allowed in our community. But thankfully the staff at our complex is on board with bringing anything in that will help Mattie. So Jax made it to our home and played with Mattie outside. Mattie got animated, he was moving around in his wheelchair and was even having wheelchair races with Jax (see the picture on the right). I tried to capture the spirit of the moment. Thank you Carrie for coming over, for the wonderful homemade cookies (which reminded me of cookies my Grandma used to bake during the holidays), and for introducing Mattie to Jax. Enjoy the pictures!
We then headed by car to the Mall/White House to see the Nation's Holiday display. The huge Christmas tree was incredible, as well as the the miniature trees from all 50 states and US territories which surrounded the Nation's tree. In addition to the trees, there were lovely Christmas trains running around the trees that caught the attention of people of all ages. In addition, Mattie loved the Yule log which was burning and keeping all of us warm. The largest logs I have ever seen formed this display. I captured several wonderful pictures of this adventure that I would like to share with you.
Grandma, Mattie (bundled up!), and Granddad
One of the wonderful train displays!
The White House decorated for Christmas!
Granddad, Peter, Mattie, and Vicki in front of the Nation's Christmas Tree and White House
After about an hour or so walking around outside, Mattie was getting cold, so we headed back to the car and drove home. Peter and I decided to go out to lunch today, and Peter's parents spent the afternoon with Mattie. At first it wasn't an easy transition out. Mattie did not want both Peter and I to leave, he started to cry and got very upset. So I explained to him that we needed to go out but that we would be back. We always come back. That did not seem to impact him much. So then I tried to explain to him why it was important for Peter and I to go out together, rather than separately. I made the analogy of a playdate. I asked Mattie if he wanted to go on a playdate with just himself, or would he prefer to go on a playdate with a friend? I explained to him that Peter and I enjoy spending time together, and for us going out is like a playdate. I told him that adults need playdates too, not just kids. I could see him thinking through that one. He did understand our need to go out, but wasn't happy about it.
Peter and I went out to lunch, and while we were out we connected with Ann and Bob and had lunch with them. It is ironic, before Mattie got sick, Ann asked me to find a time for all four of us to go out together, but one thing led to another and I never found a time to do this. Sad commentary, but I needed Mattie's illness to get me to slow down, and appreciate a moment and those around me. Goodness, I have been surrounded by amazing people all this time, and frankly I never gave it a moment's thought. I can tell you though I am seeing much clearer these days. We had a wonderful time at lunch and not only are we united with the Henshaw's on Mattie's care, but on so many other viewpoints about life. It is always a gift when you feel like you have connected with someone, and today was another one of those moments for me this weekend. It has been a weekend of true friendship, support, and a renewal of spirit. All I can say is I wish monday would never come.
After lunch, Peter and I drove back to my least favorite place to be now, Toys R Us. We needed to return an opened DVD case. This was a TRUE experience. We spoke to three people and quickly knew we had to escalate our request up to a manager. Finally the manager had a heart and took back this high definition Wall-E DVD. I will never make that mistake again. We then drove home, but frankly I wasn't able to bring myself to going home. So Peter dropped off the videos on our deck, his mom picked them up, and we went to my parent's apartment and literally slept on the couch for over an hour.
We want to thank Kristin E. for dropping off dinner tonight. The lasagna was a hit and you were so thoughtful to put together a wonderful cookie kit for Mattie. I look forward to doing this with him. The truffles are absolutely sinful, where on earth did you find them? I am sorry I missed you tonight, but thank you so much for your thoughtful care package! After dinner, we helped to celebrate Grandma's birthday. Mattie placed birthday candles on her cake and helped me bring it in and sing to her. I captured them blowing out the candles together. They had a good time opening gifts, and Barbara really loved the bracelet Mattie made for her at the hospital.
It is now 12:30am, and Mattie is finally sleeping. Peter and I cleaned him up for his hospital trip tomorrow, and we changed his central line dressing as well. We administered all medications and started his IV hydration. After all of this, you wonder how much more do you have to give. We tried to assess what needs to come to the hospital with us too, since if we are there for Christmas, we want the hospital room to feel Christmas like for Mattie. So now I am beginning to wind down, but I am in the midst of writing cards to all of Mattie's nurses. I know I can't do this in the hospital, and I need a minute to think clearly without being pulled in twenty directions. So before I sign off for today, I wanted to share an e-mail I received from a former student, who is now the director of guidance at a high school in Montgomery County. Theresa wrote, "I told some of my students about Mattie and they decided to do some fundraising when we get back to school in January. I hope it will be a success. We are going to have a Mattie day, so everyone can wear Mattie's favorite color and hopefully we will be allowed to have a coin/jar fund in several classrooms so students can put their spare change in it for Mattie. Our Key Club has also announced to the school on Friday that they are making Christmas Cards for Mattie. I hope to have them all sent to you by Monday. I know these are just small gestures but I hope Mattie will appreciate them. Hopefully I can get some pictures of the kids in his favorite color and I will email them to him directly. He is a very brave boy. He is amazing. Also I told my department about Mattie and we normally adopt a family and we decided that the Northwest Counseling Department would adopt the Brown family for the holidays. I will be making a donation in their name to Mattie's fund by Tuesday. These are just minimal things but I hope they will help Mattie during the holidays." What can you say to all this kindness and generousity? Thank you Theresa for walking this journey with me, even though your family is also being affected by this horrible disease.
I end tonight with a saying that Debbie Pollak's (Mattie's art teacher) grandmother used to say, "if you make just one person smile, you have had a good day." From my assessment so many of you helped to bring a smile to my weekend, that you should feel like you had a good and successful day!
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