Monday, July 20, 2009

Monday, July 20, 2009

Quote of the day: "The language of friendship is not words but meanings." ~ Henry David Thoreau

As usual, Mattie had a hard time falling asleep last night. However, close to 1am, he finally just put his head down and went out like a light. He woke up a few times during the night, but then went back to sleep quickly. However, neither one of us could get up this morning. Since I am still working on things for the conference this week, I forced myself to get up to do things, otherwise, I knew I would never get them done today.

When Mattie woke up this morning, he entertained himself with Legos, while I took a shower and got dressed. Before I proceed to get ready, I always check with Mattie to see if he needs something before I get into the shower. This morning he said no. While I was in the shower, I heard Mattie screaming. It is hard to hear screaming with the water running, and being on a different floor, but I think mothers are programmed to react to certain sounds. Of course when I heard screaming, I got worried, because I have no idea what Mattie was screaming about. So needless to say, I came flying out, soap and all. It is times like this where I realize I have NO peace in my life. I can't do anything for five minutes without getting bombarded with an issue or problem. For the most part, I just accept this as my life, but there are days like today, where this gets to me. So you may be asking what was Mattie screaming about? He was screaming because he had to go to the bathroom. Mind you I asked him two minutes before if he had to go, and he said no. Needless to say I expressed my dissatisfaction.

Mattie and I played for several hours today with his Lego train set. Mattie seems to like to see the trains collide and derail, and then gets a kick out of repairing them. Lovely! As the afternoon rolled around, we packed up and headed to the hospital for his elbow x-ray. When we got to the radiology department, Linda met up with us. Linda entertained Mattie, with a wonderful bean bag tossing game while I filled out paperwork for insurance purposes. Because you know I clearly haven't filled out enough paperwork this year. Linda helped us secure Theresa, Mattie's favorite x-ray tech for his pictures today. Mattie handled the x-rays very well, and Linda was commenting on how mature and more at peace Mattie looks now. Now that he has been living away from the hospital. I guess I never thought of this or have even seen these changes in Mattie. I appreciate Linda pointing them out though. I think I haven't observed them mostly because we are dealing with a whole host of other issues at home, and I spend every second of each day with Mattie. That alone can breed problems. We love our children, but I don't think we were meant to spend every second of every day with them or anyone else for that matter. Without distance, perspective, and other experiences, it is easy to get on each other's nerves. Though despite the fact that we spend an inordinate amount of time with each other, we love each other, and respect each other deeply.

After the x-rays were done, we said good-bye to Linda and hello to Anna. Anna wasn't feeling well today, so you will see she is wearing a mask to protect Mattie for any germs. Anna actually sounded and looked fine, but I appreciate her taking precautions around Mattie. Mattie came into physical therapy today tired and with a bit of an attitude. I am hoping that the novelty of going to the clinic hasn't worn off. Mattie refused to stretch his leg today and to stand and walk. In fact, Anna suggested that Mattie wear a heating pack on his knee in the first half of the session to loosen up his muscles, so that the stretching later would be easier. But he refused to use heat, and at times to help himself. It is moments like this, I get very frustrated with him. I don't express my true anger over this, but instead I try to rationalize with him. But this is the main challenge of dealing with a seven year old. The logic is faulty, he can't reason that following Anna's advice, though painful initially, will benefit him in the long run. In addition, to his attitude today, he had me participate in some of his exercises, like scooter racing. I certainly don't mind racing him if this will inspire him, but this is another example, of where Mattie doesn't afford me a break. I was observing another mom who came to therapy and she was sitting reading a magazine while her child was working. I have never had such a child, and am always in amazement of those moms who seem to be able to capture this time for themselves. Needless to say, Mattie and I are both getting therapy, which after a year of inactivity, I tell Anna that isn't a bad thing for me.

I snapped some pictures of Mattie during therapy today. You can see him working on strengthening his right leg.

Left: Mattie on the swing. Anna had Mattie balance and hold his full weight on his right foot.

Right: Mattie bracing himself with his right foot, as he is riding down a ramp on a scooter. This actually takes a lot of strength to do, and really exercises Mattie's right leg muscles.

Left: Mattie strengthening his arms. He had to pull himself across the room pulling a rope, while riding a scooter.

Right: Mattie having a tug of war with Anna. Molly (a hospital volunteer) sits behind Mattie to support him. Check out Mattie's facial expression! It is priceless.

Once therapy was over, I could tell I wasn't feeling well. Not because of therapy, but I was just very tired and felt like I had the flu, without having symptoms. I just felt very worn out. As I transferred Mattie to the car, I told him I wasn't feeling well and that my stomach bothered me too. Mattie was very funny, he offered me his Kytril (an anti-emetic), his prevacid (for acid reflux), and his pain medication. I started laughing. I told him we can't share medicine, that it is just for him. He said he would be happy to give me some if it would help. I thought that was cute. When we got home, I made Mattie something to eat, but I still wasn't feeling well. Mattie could tell I was dwindling, so I decided to lie down on the couch with a pillow and blanket while he was playing. Something I RARELY ever do! For the first time ever, Mattie did not bother me, wake me up, or pester me to play. In fact, when Peter walked in the door from work tonight, Mattie told him to be quiet because I needed to rest. I really appreciated Mattie's empathy, and of course Peter's support.

We want to thank the Bartlett family for a wonderful dinner tonight. Thank you for your continued support and help. We had this lovely dinner outside, despite the fact it was drizzling. At dinner, I couldn't really eat, but sat there, and slowly through talking with Peter, pulled myself together. After about an hour, I felt a bit better. As we head into Tuesday, Mattie has his therapy appointment with his psychiatrist and then physical therapy with Anna. Right after therapy though, I have to run home and get ready for the conference, which starts tomorrow evening. Wish me luck and strength as I have three intense day and nights ahead of me this week. I question whether I have the stamina for this!

In addition, tomorrow evening Peter's parents are coming in from Boston to help entertain and care for Mattie while I am at the conference. This will give Peter the opportunity to do some work, and yet be around to transport Mattie back and forth for his MTP treatment and physical therapy appointments. I also wanted you to know that Dr. Bob did call me tonight with the x-ray results. Like we suspected the same issue that is occurring in Mattie's left wrist, is also happening in Mattie's right elbow. In this particular case, the radius (one of the long bones in the arm that extends from the elbow to the wrist) cap is growing and therefore explains the bulg I am seeing by Mattie's elbow. Now the question becomes what to do with this wrist and elbow issue. I know Bob knows, and I guess I know on a deeper level than I care to accept or admit right now.

I would like to end tonight's posting with three messages I received today. The first message if from my friend, Charlie. Charlie wrote, "So glad you got some alone time on Sunday; we all know what that means to you. You have taken the correct position with regard to the Legos with Mattie I believe,; it is one of the few things that can consistently involve and challenge him. Perhaps you can do as you intended to with the Taj Mahal and bring in the background or read/write stories about some of the items he chooses to build. I was delighted to hear that Mattie was involved and moving about in his playing with Charlotte; clearly that friendship is one that goes above and beyond the average and tells you how valuable a gift friendship can be. The pictures of the two of them are priceless; Charlotte is indeed a good sport and a wonderful role model and friend for Mattie. I will pray about the upcoming x-rays and hope the news is good."

The second message is from my friend and colleague, Lisa. Lisa and I went to graduate school together, and now we have the exciting opportunity to work on a textbook publication together. Thank you Lisa for the support and for believing in me professionally as well. Lisa wrote, "I am sending you this message to simply wish you a special birthday and special year. I have very few words this morning, other than you are special and deserve so much this upcoming year. It is interesting because when I first met you in 1998, I thought Vicki is smart, a wonderful leader, and very kind. I liked you and appreciated you. As time wore on, I thought no one I would ever meet would be a more wonderful mom then my sister, but you and my sister are in fact the very best moms I know. So now I have added to the list from 1998, Vicki is one of the best moms I know alongside my sister. In fact, you may think this it is weird, but after being by your side everyday (of course from afar--but yes, I think of you, Mattie, and Peter everyday) and sharing in your trauma virtually, I feel like you are my sister too. But when I think of you on your birthday this year and the hell you went through this past year one word comes to mind: hero. Vicki you are a true hero. And you have good things coming your way, this I know for sure. You may have been to hell and back, but my guess would be you are smarter, wiser, better, bigger, more loving and forever changed. I am proud of you, Vicki. You are my hero. You and the situation with which you have been faced has made me cry, smile, cheerlead, and get angry. As you prepare for this next year, this is what I know for sure (I think). Vicki, YOU have turned a corner. The corner may be small and slight, but you have turned a corner. Forcing yourself to go out, have dinner on the deck, and maybe even cook all are the best medicines the doctor could order on your birthday. Please keep doing them. Finally, when I read the blog last night, this is the other thing I know for sure (I think). MATTIE has turned a corner. If you go back to the blog, and look a the fourth picture from the top (under Sunday) this picture "looks like" a child who has turned a corner. This picture reflects something different in Mattie. This look I hope you will celebrate. As I read about your Lego house, I smiled. In part, Legos are Mattie's medicine. My guess is that he finds the process therapeutic. Think about it. It is something he can do well, he has mastery over the process, and completing each project says to Mattie's mind's eye: "I am good at something." "I still can do things." "I am smart, I figured this LARGE challenging Lego project out." My guess is that these projects build his confidence, and allows him to use the skills he still fully has and compensate in a healthy way for the skills he has temporarily lost. He can thrive with Legos."

The last message is from Coach Dave. Dave is the head football coach at St. Stephen's/St. Agnes School. Our family had the wonderful opportunity to meet Dave this year, and we are honored to call him a friend. Coach Dave wrote, "I wanted to let you know that Evelyn and I are thinking about you and Mattie all the time. He is such a strong individual and the two of you continue to do amazing things. I read the blog and wanted to echo the sentiments of the school. Mattie and you both are a huge part of the SSSAS community. I cannot wait for the day that Mattie returns to classes at SSSAS. The football team was up at Gettysburg College the past week for our football camp and a bunch of the guys were asking about Mattie. They are excited for practice to begin so we can take a new team picture for Mattie. I am sorry to have been out of touch for awhile. Please know that not a day goes by that Evelyn and I don't think about you all. I cherish my Mattie bracelet and find it incredibly inspirational particularly during difficult times. I love his smile and his mind. He is so smart. Evelyn and I are looking forward to being able to deliver a meal to you in the near future. Please let me know if I can do anything else. You are always in our hearts and thoughts. Please tell Mattie that I said hello and that the football team is thinking about him."