Quote of the day (thanks Charlie!):
"We're so busy watching out for what's just ahead of us that we don't take
time to enjoy where we are." ~ From Calvin & Hobbes
time to enjoy where we are." ~ From Calvin & Hobbes
Mattie had a late start to the day today. Because Mattie is on IV hydation at night (his choice, since he refuses to take oral medications to balance his electrolytes), he gets up many times during the night. This doesn't seem to bother Mattie per se, but I can assure you, it wipes out Peter and I. Peter has been taking on the nights since we got home from the hospital on wednesday. But I know the night routine is grueling. Getting up three times a night doesn't sound bad in theory, but it is the cumulative effect that is wearing Peter and I down. Mattie continues to sleep upstairs in his room, inside a three person tent. The tent is so large, that it takes up his entire room. The cords to the tent are connected to all my closet doors, so at the moment, it is almost impossible to get into the closets without collapsing the tent! Makes for an interesting arrangement.
Mattie had a visit today from his Aunt Lisa, Uncle Chris (Peter's brother), and his cousins, Nat, Sydney, and Will. Mattie enjoyed his time today with them, opening up their Christmas gifts, playing with knex, legos, puzzles, and cars. At around lunch time, Alison, Ellen, and Tyler (Ellen's son, and many of you will recall the young man who raised a tremendous amount of money for the Mattie fund hosting a bingo night at his school) came over to pick up bags of Mattie items that I wanted donated. I can't thank this wonderful team for their help on a saturday! Thanks Alison for taking all these items off my hands today and taking on the responsibility of making the donation. In fact, Mattie was interested in the whole donation process today, that he insisted on going upstairs to my parent's apartment to check out what was being moved. Fortunately Lisa, my sister-in-law, and I went to my parent's apartment earlier in the day and took Mattie's things that were in clear plastic bins and moved them into dark garbage bags. So the contents inside the bags were not revealed. I think if Mattie saw his things being donated, things he no longer plays with or are suitable for him, he would have been very upset. Later in the afternoon, Mattie even took a long wheelchair walk with his family around the Washington Mall. We captured a couple of pictures of the kids today horsing around on the floor.
Left: Mattie, Will, and Sydney
Right: Nat, Mattie, and Will
We had lunch together today as a family and thanks to the Dowling family, we had an outstanding homecooked dinner. Mark and his son, Sean, came over today and delivered us a spectacular dinner, and Mark explained to me that he was born in Iraq and made us an Iraqi style chicken dish. It was wonderful, along with a lovely pasta dish and salad. Mark even brought Mattie a vanilla shake and wonderful ice creams. Thank you for working so hard and for bringing dinner for our whole family. That was very generous. You both are good cooks. It is wonderful to see a dad teaching his son how to cook! Mattie loves the airplane as well. It is a fascinating plane, you literally throw it backwards and it comes back to you like a boomerang. We also love the electric toothbrush, a great gift for Mattie since he is having trouble brushing his teeth now.
Earlier in the day I received a phone call from Grace (a friend and RCC mom). She invited all of us to go to Zoolights tonight at the National Zoo. Basically for those not familiar with this event, the zoo creates all sorts of light displays throughout the property and it is a fun and family oriented way to stroll and enjoy the season. Mattie did this last year with his buddy Alex, so I was familiar with the set up. This event did not even register with me this year, and I am so happy that Grace suggested it. It was a wonderful way to get outside, see lights, and thankfully it was a warm night. So everything was in our favor. It was nice to see our RCC buddies again, since the whole Putnam and Lee families joined us. They got to meet Mattie's aunt, uncle, and cousins as well. The light displays were very nice this year, and there is just enough not to overwhelm anyone, and yet enough to capture your attention. I took a picture of all the kids in front of the zoolights sign!
Kate, Nat, Sydney, Will, John, Mattie, Eric, and Christopher!
Toward the end of the evening, Mattie was getting upset and basically wasn't happy. By the time we got him to the car he was crying. We asked him why, but I really knew the answer. Mattie gets very upset these days when I talk to other people and do not focus my attention solely on him. Naturally it is impossible to spent 100% of my time focused on Mattie, but he gets easily slighted, and tells me that when I talk to other people it means that I don't love him or think he is special. This is not the first time I have heard this from Mattie while he has been sick, and each time, I try to help him work through this and understand how unrealistic and irrational his statements are. But there are times I am only human, and it is hard not to want to blow up, because in his mind I am not entitled to any free time. Part of if is a six year old manipulating the situation, and the other part is just his illness and insecurities. It is a fine line to walk when raising a child who is so sick. You have an obligation to be a parent, but I tell you it is very hard to parent effectively sometimes.
When we got home tonight, I could tell Mattie had something in mind to do. For the past couple of days Mattie has wanted to surprise me with something. So Peter sent me upstairs. About 20 minutes later, in walked Mattie as Rudolf the Red Nosed Reindeer and Peter as Santa. Mattie wanted to create something for me and give me a gift for Christmas. I think Mattie has been feeling that I needed to get something from him, and Peter helped him meet his goal. I took a picture of the delivery process and then the final product, which was a castle. It was a lovely surprise. I think Mattie also loves playing Rudolf and wearing the antlers.
As I write this blog we are watching "Charlie Brown's Christmas movie." A Christmas movie that transcends the generations, doesn't it?! I am reflecting on our day. I always wonder how children who spend time with Mattie process what is going on with him. Lisa was telling me today that she had an interesting conversation in the car with Will a week ago. Will is about 18 months older than Mattie. Will told Lisa that while he is at school, and in between the times he is learning, he spends time thinking of Mattie. I found that comment very interesting, because clearly children have their own way of processing what is happening to Mattie. I guess a part of me feels as if others are leading their normal lives, and perhaps occasionally think of Mattie, but I am learning that isn't always the case. Will is an example of how he is internalizing what is going on with Mattie. I also spoke with my mom on friday, and she was telling me that she may be in Los Angeles, but not a minute goes by when she doesn't think about Mattie and our situation. I think it hard to leave us after spending several months with us and realizing just how much help we need. I began to see that she is as deeply hurt by Mattie, almost as much as I am. I don't know, that probably makes sense to all of you reading this, but that was a revelation to me. Somehow I think that the magic of physical separation from us makes things better for others or makes the situation go away, but I think Mattie's situation is so profound that it does impact you no matter the age, circumstance, or your geographical location.
Tonight I was talking to Mark Putnam. Mark told me how much he enjoys reading the blog, but wonders where I get the strength each day to write it. Good question. I think the blog serves multiple purposes. It is a way of self expression, a way to document that is happening in Mattie's life (which I like to have for historical and record keeping purposes), and most certainly a fantastic way to keep connected with all of you and build our community. Sure there are some nights I may not feel like writing, but once I sit down, things usually just flow out. I chalk that up to my days as a graduate student at the George Washington University. There is a certain level of discipline required to get a doctorate in counseling, because you have to write process and progress notes on each client you counsel. Basically there is A LOT of writing involved in the degree. Writing becomes just a part of you after a while. I learned to really perfect my writing at GW, and thankfully so because this a great coping mechanism that I turn to now in this time of great stress and heartache.
As I sign off for the day, I am happy Mattie is having a good time with his cousins! It is wonderful to see, and I feel very fortunate to be surrounded by so many people who are eager to help us in a moment's notice. We are seeing the true meaning of the holiday season through each and every one of you. Thank you!
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