If you are looking for an upbeat blog tonight, then I am sorry to disappoint you. Today was a hard day from the beginning to the end (and for us the night is still young!). Mattie woke up edgy today, and though we thought he was going to be excited to go away, since he was reporting excitement all week long, we instead dealt with one tantrum after the other, which made getting out of the house and into the car almost impossible. Mattie was very fixated on working on a LEGO carousel set that I got him earlier this week. He has certainly made headway on it, but it is a 3500 piece set, and takes time. A part of me feels as if Mattie did not want to leave today unless the set was completed. Despite level setting his expectations, it did not help. I freely admit I was getting very frustrated with Mattie's behavior. He was so focused on the LEGO, that he wouldn't feed himself breakfast and lunch, and forget about getting dressed. He wanted me to hand feed him, and sometimes I do help him, but he is more than capable to feed himself, and the simple fact was that Peter and I had to pack up things for the trip. At one point, Peter went down to load things into the car, I had made lunch for all of us, and I expected Mattie to stop and eat, so that we could then get him ready to leave for our short trip. Mattie refused to listen or comply. It was at that point, that I absolutely lost it. Though he has had a hard year, I really do not think this gives him the right to have such selfish behavior and I told him as much. We had many words with each other and then he lashed out by saying I was a bad mom and he hated me. All natural, I know, but not what I needed to hear. Mattie wouldn't calm down, and had a massive tantrum, all over the simple fact that I wanted him to feed himself lunch. It took Peter and I over an hour to stabilize this situation. By the time this was done, I felt as if I made the wrong decision to go away this weekend. I could sense Mattie's attitude, and the stress level felt by Peter and I.
None the less, we continued along with our plans. We want to thank the May family for their wonderful traveling goodie bags filled with all sorts of toys and treats for Mattie, and wonderful goodies and wine for Peter and I. Thank you Liza for thinking of us and giving us this bon voyage treat. Our road trip was painless, mainly because we are only 40 miles away from Washington, DC. When we arrived at the resort, Mattie seemed focused on finding Abigail. So I checked into the room, and Peter took Mattie to the pool where Abigail was. Though Ann and her family gave Mattie a warm greeting, Mattie was intimidated by the pool, the water, and most likely seeing all the kids and activities he couldn't do. Minutes later Peter came back to the room, and I was stunned to see them. Mattie spent the rest of the afternoon in our room, doing a LEGO project with Peter. I wasn't sure what to be upset about first. I tried to reason with Mattie about the fact that this was a vacation, and perhaps he wanted to take a walk, or sit in the hotel and do a LEGO. Anything but be couped up inside the room (something we can do at home)! But there wasn't any reasoning with Mattie.
While Peter and Mattie were playing together, I went to the pool and sat with Ann, Bob, and Ann's friend, Liz. This was the nicest part of my day! I could see the kids were all having a good time together, which of course was a wonderful sight to see. However, I have so many mixed emotions. I feel terrible admitting this, but I am SO jealous of people with healthy children. I see them having fun with their children, and this is not something I can do with Mattie. Or let's put it this way, the typical activities a seven year old boy should be able to do, Mattie can't. I will never get this time back in his life, and instead, the time we have together is filled with conflict and angst. Certainly I think a more normal life is obtainable, or I have hopes it is obtainable, otherwise I would give up now, but with that said, I can't say that there are times I just want to throw in the towel. I live this life day in and day out. It is socially isolating and depressing. What is crystal clear to me though is Mattie's personality has been deeply affected by cancer. It has changed how he relates to people and the world around him, so though technically Mattie may be cancer free physically, mentally the disease has taken hold of him. So now I am fighting to get my son back from the emotional turmoil he has lived through for the past 12 months. I can assure you it is hard for us to keep a stiff upper lip, when Peter and I have survived this turmoil too.
What truly bothered me today, as if Mattie's behavior wasn't upsetting enough, Peter and I landed up snapping at each other. I think we are both at our breaking points and can tolerate different things about Mattie's illness. Which is fortunate, because when one can't handle one aspect, the other steps in. But despite setting our expectations for this weekend on the low end of the spectrum, Mattie has a way of rocking our world and bringing us to a new all time low. His moodiness, his demands, and his irrationality about things are overwhelming. Today I wanted to just scream from the roof top, but then I figured who honesty is going to get what I am screaming about?! Well I know all of you would, but you have lived this with me for 12 months.
As the evening rolled around, Mattie did go down to the lobby of the resort, and got to see the fireworks that the property displayed. Again, Mattie was edgy and really did not want to interact with the other children. In fact, Mattie refers to the other children as "the kids." As if he is not a kid. Perhaps on some level he doesn't think he is one. He certainly has seen and experienced things this year that most children have no knowledge of. His terminology of "the kids" caught my attention. Despite the day, Mattie did enjoy the fireworks. He smiled and was excited. But just as quickly as this excitement came, it left at the sam
e quick pace. In fact, he got me so upset, that when we were trying to walk Mattie back to the room, I almost fell. If Peter did not catch me, I most definitely would have hurt myself. So I was shaken up, and when we got back to the room, we all had to reset.
Ann and her family have really tried to include us, but the sad part is, because of Mattie's feelings and behavior we have to isolate ourselves from others at this point. I am fortunate that Ann understands this and doesn't take this personally. Which helps us tremendously. I am not sure I am expressing myself adequately, but step into our world and try to imagine that one day you wake up and your child is so emotionally different from the person you raised. That your child can't seem to find happiness, and he is in some ways emotionally and mentally older than his peers. Older because he has been surrounded by adults all year, dealing with life and death issues. Life and death issues that I believe many adults in our society shy away from! I wonder how would this make you feel? Yes this is an academic exercise of imagery for you, but this is our reality. I am also flooded with stares at Mattie. Mostly I can deal with this, but on a day like today where I know WE ARE DIFFERENT, staring only further grabs a hold of my heart.
I realize that tomorrow is another day, and with another day, I HOPE that things will be different. It takes a certain level of strength, determination, and love to greet each day as a new day, because Peter and I live through some of the worst things life has to offer. As I said to Ann tonight, perhaps I am destined not to be happy. I also don't feel like I can be a part of the healthy world. This is world that no longer understands me or Mattie (I qualify this statement certainly, because there are all of you who get it, but I don't travel around with all of you in a bubble). Now mind you, you may say, wow Vicki sounds depressed. But I can tell you I am not clinically depressed, I am the product of living in hell on earth, and I do not see how on earth I couldn't be impacted by what is happening to Mattie.
I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I read the Washington Post article and I am sending the link out to everyone I know to ask them to request support of their representatives for legislation to help solve the tragedy of childhood cancer. All of us appreciate what wonderful spokespersons you and Peter are on this issue and we all wish you did not have such a personal stake in the outcome. It's clear that getting Mattie back on a schedule is going to be a major undertaking. In the meantime you may have to shift somewhat to his schedule and try to get some extra sleep while he is sleeping in. It seems that while Mattie is not enthusiastic about going to physical therapy, once he gets there, they are able to engage him and get him to participate fully. The pictures of Mattie both building legos and doing his therapy are great; as long as he is moving and has things he wants to do (however inconvenient) he is on the road to recovery. I wish for your sake (and his) that this road was a little smoother and more direct than I suspect it will be; however, keep the faith as things are headed in a positive direction now and the ultimate goal is Mattie up and about, enjoying his life, his family and friends."
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