Saturday, December 20, 2008

Saturday, December 20, 2008

Quote of the day from Peter: “Victory belongs to the most persevering." ~ Napoleon

Isn't this picture the true spirit of Christmas? Tonight I went over to Ann's house and picked up this amazing wreath. This wreath was created by hand with love by Debbie Pollak (Mattie's art teacher at SSSAS) and the first graders at SSSAS. The wreath is comprised of paper flowers that have been colored and decorated by the children. Some are even signed. Debbie then arranged them together in her usual artistic fashion. In addition, there are pom pom creatures with adorable faces on the wreath. There is nothing that Debbie can't do, and her incredible love and support for Mattie are heartwarming. She wanted to create something that would bring a smile to Mattie's face, and to also bring Christmas to him. She especially wanted Mattie to know that his friends haven't forgotten him. To me that is so crucial especially now when Mattie is cutting himself off from a lot of the outside world. This wreath is already hanging in our home and serves as an artistic symbol of the love, support, and deep caring that exists in the world for Mattie. Thank you Debbie for always thinking of Mattie and being a wonderful example of the spirit of Christmas.

Today was in a way a miraculous day for me. Mattie spent the day with his grandparents and I went over to Christine's house. I went over with the idea that I was going to help her and Ellen wrap presents for the nurses and other special staff members. This is a huge task, especially if you could see the number of presents being distributed. I feel that so many people at Georgetown need to be acknowledged for the work they do. Sure they are just doing their job, but many of them go above and beyond their job descriptions and Christmas is the perfect time of year to say thank you and to let them know we think they are special. So I arrived at Christine's at around 1pm. When I got there, I could see that Christine and Ellen had done most of the wrapping and assembling already. Ellen then proceeded to tell me that there is no way they were going to let me spend my free time wrapping gifts. So instead, Ellen said she was taking Christine and I out to have a manicure and pedicure and then Christine was going to take all of us out to lunch. I much say I was a little stunned. I wasn't expecting this surprise. I did not see that coming, but what a delightful day. I haven't had a manicure and pedicure in ages, and I can tell you I never in my entire life went for a manicure and pedicure with friends. For a moment in time, I felt like I was living out a different life. Almost like a character in a movie surrounded by friends and having a bonding moment. I loved the social experience and I truly believe that Mattie's situation has made the three of us pause. It has made us also see the importance of stopping, taking care of ourselves, and allowing us to enjoy spending time together without worrying so much about our obligations. For me it is sad that it took Mattie's illness for me to have a priority check! Christine even said, why didn't we do this last year? I think through Mattie's illness, it has enabled me to have even more meaningful relationships and friendships than I had before. Mind you I am not recommending or wishing upon anyone to have a sick child to come to this revelation, I guess I am just saying, since I am in this situation, I am trying to grow and learn while adjusting to it.

We had a lovely lunch together as well, and I had my first experience eating fried olives. This may not sound appealing to you, but I am an olive fan, and frying them and putting them in tomato sauce was delicious. We went all out today, we had wine with lunch, splits salads, had entrees, and of course wonderful conversation. I can't thank Christine and Ellen enough. Their friendship is a true gift on so many levels, and I am not sure if they know how much today meant to me. This moment of happiness I will carry with me and hold dear as I head off to my own private Alcatraz on monday. But I have to say that a big thank you also goes out to James, Christine's husband. James watched all the kids today while we went out and had a great time, and mind you we were gone for a significant amount of time. So I can't forget to thank James for making this possible!

After I left Christine's house this evening, I headed off to Toys R Us. Definitely NOT my favorite place to be on a saturday before Christmas. The place was a zoo at 7pm. If the economy is tanking, you just couldn't tell by being in the store. People were all over the place loading up carts! But I was on a mission. Mattie wanted transforming Wall-E. I wasn't planning on coming home tonight without it. When I got into the store, the amount of chaos was overwhelming and I had no intention of roaming around the store. So I ran up to a representative and had him walk me to where Wall-E was. When we got to the shelf there was nothing on it. No Wall-Es! Major problem. I then called up Peter to have him break the news to Mattie and we were negotiating other items over the phone with Mattie. As we were talking on the phone, something caused me to turn around and head back to the empty shelf again. This time, on the shelf stood one transforming Wall-E. I don't know how it got there! But I snatched it up! I even bought Mattie the movie Wall-E, because he is in love with the character but hasn't seen the movie yet (side note: I grabbed a high definition version of this movie and tonight when I tried to show it to Mattie, I couldn't get it to work. You would think I would know that I can't show a high definition DVD on a TV that is not high definition. Oh well! He was SO upset with me. Clearly I won't be making that mistake again. So I started looking for the Toys R Us receipt so I could return it tomorrow, and I couldn't find it. Panic set in, until I found it. Mind you all of this is happening at midnight, when Mattie seems to have an inordinate amount of energy!).

When I got home, Mattie's grandparents told me about Mattie's day. Mattie started off the morning a bit grumpy, but then opened up a present that his buddy Paul sent him. It was a lego advent calendar. A major hit for a lego fan. This changed Mattie's mood and he started building with his grandparents when I left for the day. But when I left I could sense Mattie was edgy. The goal of today was for Peter and I both to have a break. But that did not happen for Peter unfortunately. Mattie also spent some time outside today playing with his remote control cars. He also had several visits from JJ (our resident Jack Russell Terrier). JJ brought Mattie a delicious lunch today, and apparently Mattie ate an entire plate of pasta and then pizza. Way to go Mattie. Way to go JJ! But Mattie really did not want to separate from Peter today. Peter did go for a haircut and then attempted to rest in my parent's apartment for a bit. That lasted about 20 minutes, and then he received a call from his mom that Mattie really needed him. I can only imagine how frustrated and upset Peter was. I have many days like this, and you feel if you don't get a break, you will just crack. When Peter told me this story, I felt a bit guilty for leaving today. But then Peter snapped me back into reality and told me how happy he was that I had a good day.

We want to thank the Frye family for providing us with a wonderful Chinese food dinner. We all enjoyed it and ate as a family. Mattie especially loved the adorable light up tree you and singing puppy gifts. In fact the tree has been set up and is incorporated into his Christmas display. I started talking with Mattie tonight about going back to the hospital. He definitely did not want to go back on sunday night as planned. He has agreed to go back on monday. There are many advantages to going in on sunday, because it streamlines the whole admissions nightmare, but then it cuts short our time at home. Frankly another night at home is the best therapy, and I will deal with whatever run around I have to on monday. So I sent an e-mail to Dr. Toretsky tonight and he immediately responded and said he understood my position. It is glorious not to be living in a fish bowl! I always took this aspect of my life for granted, but not anymore. I crave privacy, alone time, peace and quiet, and normalcy. There is NO NEW NORMAL! "The NEW NORMAL" from my perspective is a term created by someone who hasn't a clue about raising a child with cancer.

It is now 12:45am, and I am winding down, I just got Mattie to sleep, and I sent Peter up to bed at 10:30pm. I have Mattie duty tonight, and with that you don't know what the night holds. But Peter and I have certainly gotten the medication management down to a science. Which isn't easy since Mattie has anxiety, depression, and acid reflux medications, not to mention daily flushes of his central line, calcium supplements, oral care to prevent mouth sores, and now daily night IV hydrations. No problem! I am thinking of going back to school to become a nurse (I am KIDDING!). The funny part is the medical resident said to me before I left the hospital on thursday that she thought I would need an in home nurse to help me manage the medications and other stuff. I started laughing. Back in August if you told me I was going to be doing all of this stuff, I would have said no way. Now it is second nature to me and to Peter. So NO, an in home nurse isn't necessary for medication administration and management. When it comes to your child, you can learn just about anything, can't you?!

I end tonight with the big news around here. Mattie lost his third tooth! However, we can't find it. I frankly think he swallowed it. He was worried the tooth fairy wouldn't give him something if he couldn't show her the actual tooth. I said that wasn't necessary, but asked him what he thought the tooth fairy was going to bring him. He has requested another set of Christmas lights! Thank God we have another box on hand. Stay tuned for his reaction to the gift tomorrow.