Thursday, July 2, 2009

Thursday, July 2, 2009

Mattie Quote of the day: Peter asked Mattie at dinner about his HOPE fountain that he designed in clinic yesterday. Peter wanted to know what inspired him to ask me how to spell the word, HOPE. Here was Mattie's response.....
"I just wanted to know how to spell the word for happiness, so I asked how to spell HOPE!"

Quote of the day: "Hope is putting faith to work when doubting would be easier." ~ Author Unknown

I started my day this morning with an e-mail from my dear friend, Lorraine. Lorraine let me know that Mattie's story was in the Washington Post today. I was shocked until I e-mailed Peter and he told me that he had been working with a reporter covering CureSearch's event entitled, "Reach the Day." The event was held on June 22-23, 2009, in Washington, DC. CureSearch's goal is to unite and mobilize as many voices as possible in order to raise awareness and ensure childhood cancer is a national public policy priority. Peter posted a link to the article on the upper left hand side of the blog for you to read. Mattie is mentioned on page two of the article.

Mattie couldn't fall asleep last night. You are probably getting tired of reading that line with most of my postings. I can assure you that I am just as tired living this nightime routine! Mattie complained of dizziness last night, and he felt that the room was spinning. I made the assumption that it was a side effect of all the pain medications he is on. But I have been monitoring him since he reported this. However, the issue was waking Mattie up this morning. I tried everything, but he just was so tired and lethargic. Each time I attempted to wake him up, he told me that he really needed to rest. So though I am trying to get him on some sort of NORMAL (whatever that is) day/night schedule, I felt compelled by my observation of him to let him sleep. Boy did he sleep! I literally dragged him out of bed at 2pm. It is a shame that I wasn't in bed resting throughout this time.

Mattie had a 3pm physical therapy appointment at the hospital today, so I felt like I was running a marathon to get Mattie up, cleaned, dressed, and fed. Not to mention transferred into the car, lifting the heavy wheelchair, and finding a parking space at the hospital. The parking alone could take 30 minutes! But we got there on time, and Anna met us with her colleague, Cathy. On the days that Anna can't work with Mattie, Cathy will take over. So Anna is trying to get Cathy up to speed on Mattie and his personality. I would say Mattie had another great PT session today. I got to see "Steve," Mattie's right leg in motion. Anna designed exercises or games to get Mattie to use only his right leg and foot today. Before Mattie would entertain Anna's suggestions, he first wanted to pick an activity to do, so he swung on a platform swing for a few minutes, and I even saw him putting pressure on his right foot, which was great to see. However, when I look at Mattie's legs, they appear to be so frail, that I wonder how they even hold up his body. His emaciated body, his lack of hair, his coloring (and deep pigmentation on his fingers and toes as a side effect of chemo, NO it is not dirt!), and his pale complexion are constant reminders to me of the horrific year we experienced. Though I am talking about hope, healing, strength, and wellness, it will take me a while to fully embrace these concepts. I too have a lot of healing to do!

Left: Before we left for clinic today, Mattie insisted that I take a picture of his LEGO monorail. He wanted all of you to see his latest project!

Right: Mattie is racing against Cathy, who is behind him on a scooter. Mattie designed an obstacle course, and notice he is using ONLY his right foot to move. We told him he was using "Steve" power today. Mattie wasn't even using his arms in any way, because we reminded him that he is still healing from the sternotomy and can't put any pressure on his arms until his chest heals.

Right: Mattie was working very hard today! In fact, after all the scooter races and pushing himself on a swing using his right foot, he was exhausted. After about 45 intense minutes, he was ready to go home! Anna and I were thrilled with his progress today, and I have decided to take him to the hospital Monday through Thursday each week for physical therapy. I am hoping this daily routine will help encourage and strengthen Mattie's body to heal and get back into an active lifestyle.

As we were leaving the hospital today, Mattie had to go to the bathroom. However, Mattie will not use a regular bathroom, in fact the sight of a toilet frightens him. I certainly can travel around with a urinal, but not a commode. So my stress level was rising because he had to go to the bathroom, but only wanted to go at home. So needless to say, I found a way to transfer him quickly and safely back to the car, and got him home in time. It felt like to beat the clock. I will have to give this some thought about how to handle this, I even suggested to him a portable potty, like we used to use when training him as a toddler. But that suggestion was simply insulting and ridiculous to Mattie. So I am back to the drawing board on this issue.

When Mattie and I got home, he wanted to build some more with LEGOs. What a surprise!
However, he pulled out a set with 3500 pieces. Those of you familiar with LEGOs know this is quite a project and undertaking. When Peter got home tonight, we took Mattie out to dinner. Dan was originally going to cover Mattie today, but he had a meeting this afternoon that he had to attend, so I figured this gave us a good opportunity for all three of us to go out to dinner. Mattie agreed to go to dinner, however, when it was time to go, he was upset that he had to stop building with his LEGOs. Despite bringing LEGOs to dinner for him to work on, he made eating and going out a very difficult experience. Every two minutes he kept asking me if I was done, because he wanted to go home. Needless to say this wasn't a pleasant, calm, or enjoyable dinner. But I am so used to these moments this year, that they are more commonplace than unusual. For some people this may not be such a loss (having a peaceful dinner), but food and meals have always been important to me. In fact, prior to Mattie being sick, regardless of what I was doing, I was always cooking. We rarely ate out, but now our life is quite the opposite. I don't cook any more. I don't have the desire, patience, interest, or even energy. Fortunately thanks to all of you, and Ann coordinating this, I don't have to worry about meals. That is truly appreciated. Though I must admit Mattie was the kind of kid that never enjoyed eating, sitting still, or being at a meal table. This was a constant source of frustration for me, since so much can occur around a family table. Not just eating, but sharing, learning about each other, and connecting. So this has been an area of my life that I have been working on for years, and then this year when cancer stuck, this no longer was a priority. I, unlike Mattie, as a child always loved sitting at a table. Listening to people talking, watching and observing their every moves, and getting to know what foods pleased them. I guess a part of me is saddened that Mattie and I can't share this love together.

While at the restaurant tonight, Mattie was building with LEGOs. He designed a building with an American Flag on top of it. He said he was getting ready for the Fourth of July. We discussed the fourth of July in the car ride home today. He wanted to know what the big deal was, and why would there be fireworks on the 4th. Basically why was it even a holiday? So we discussed the importance of independence and commitment to certain ideas and beliefs, which to me are all the great principles that formed our Country. I also said that in essence this is our Country's birthday, and you can't have a birthday without celebrating it. That of course Mattie got immediately. So the questions this afternoon, seemed to lead to incorporating the theme into his LEGO design. At dinner, Mattie built, I shovelled food into his mouth, and Peter kept getting him to drink a whole glass of milk. I don't know about Peter, but after the meal, I was exhausted. Between building and balancing his desire to go home, I had had it.

When we got home, Peter and Mattie decided to go to Target and pick up some things for our trip tomorrow. It was lovely to have a quiet house for an hour! While they were gone, I had to hop onto a professional conference call. It hit me today, being July 2, I am NO longer the president of a national association. I am not sure why that just dawned on me, since my term ended on July 1. Somehow this hit me hard today, because all I could reflect upon was a lost opportunity, a failure on my behalf because of my lack of leadership and focus, and then I got a hold of myself and realized that God gave me a bigger task. A bigger organization to run and a cause to devote myself to, and that of course is the health and welfare of Mattie. I never had my priorities screwed up this year, but I can't say this loss isn't bittersweet. Somehow serving on the conference call tonight, only provided me with greater pain, or as a further reminder of my year. I want to thank several of my association members today who actually wrote to me and said that I did a great job as president, and that they admire me for what I have done with Mattie, and my willingness to share my story. I want to remind my readers that I typically am a private person, so this year has been an absolute role reversal for me. However, in sharing our story, I feel like it brings a taboo subject to light, and if nothing else is accomplished, I hope it is clear that cancer is a family disease.

As we head into Friday, my goal is to pull Mattie's medical supplies and everything he will possibly need for the next two days together so that we can go on our weekend get away. I know Mattie is excited, and I just hope that I can sustain this excitement.

I end tonight with a message from my friend, Charlie. Charlie wrote, "I know you were disappointed to find out that the attempt to go to alternate nights for IV hydration did not work out. Since the problem seems to be Mattie's current inability or unwillingness to eat, we can hope that as he feels better he will start eating more and make the continuing hydration unnecessary. I am really happy to read that Mattie has started to embrace getting well. It is so clear that he takes his focus and beliefs from you and Peter. This is great because it means that he trusts you and what you say and how you act. It also confirms that what you have done all along which is to tell Mattie the truth in a way that he can understand it was absolutely the right thing to do. It is wonderful to hear that Mattie is reaching out to other children now, initiating conversations and play. It tells you he is ready for more activities even if he tells you he is not. I hope Mattie continues on the path to independence and wellness and that you find the strength to keep him moving forward."