Sunday, March 29, 2009

Sunday, March 29, 2009

Quote of the day: "We don't accomplish anything in this world alone ... and whatever happens is the result of the whole tapestry of one's life and all the weavings of individual threads from one to another that creates something." ~ Sandra Day O'Connor



I would like to share two pictures we took today that symbolically represent to me a new start hopefully for Mattie and for us. Mattie loves the rainbow balloon he received yesterday at the Georgetown Children's Gallery opening. This morning he was playing with the balloon and it was hovering over his head. From a Christian perspective, rainbows have vast significance. In particular, the rainbow was a sign of God's greatest promise to us: that of forgiveness and love. His promise to never smite humanity which grants us all numerous "second chances," and the gift of Salvation. I couldn't help but wonder what message was being communicated to us today through this balloon. It is my utmost prayer that God gives Mattie a second chance and protects him now and into the future.



The second picture, Peter captured. Right outside our front door, we have a mother dove roosting and sitting on two eggs. We noticed this gift of nature yesterday morning. At first mother dove was very suspect of us, but now we are all getting used to one other, and she no longer flinches or flies away when we open the door. Peter showed Mattie the dove this morning, and Mattie is now acting like a mother hen to the dove. He is very concerned about her, and his concerns are indeed genuine. The pending hatching of two eggs seems to mark the beginning of life, an aura that I hope surrounds our household. I find it ironic, out of all the places this dove could have selected to have her eggs, she chose our flower basket. I may be grasping at straws or considered a real optimist, but in times of great difficulty, I feel the need to look to my outside world for important signs of better things to come.


Mattie was excited because Liza (one of our favorite volunteers at the hospital) was coming over today to play with him. Peter and I have asked Liza to spend four hours each weekend with Mattie in hopes that we can use this time to catch up with each other, and remove ourselves for a few hours from our intense caregiving duties. Liza and Mattie had a wonderful time together, and I take great comfort in seeing Mattie's personality blossom and of course I am equally comforted by the fact that he embraces interactions with others in his life again. Trust and security are back for him, but I will never forget how these vital components of living were threatened and violated for Mattie. It speaks to the resilency of the human spirit! But seeing my real Mattie come back only provides further evidence that Peter and I made the right decision. The decision not to leave his side, and to be there for him every step of the way through the many months we spent in the PICU. We followed our hearts and the psychological literature, which many times countered the medical advice we received. Certainly it was a large sacrifice we made but one I personally believe was necessary in order to achieve mental wellness.

While Mattie was with Liza, Peter and I went for a walk together on Roosevelt Island. It was a beautiful day in Washington, DC. At one point during our walk, we sat on a bench together and I closed my eyes and put my head on Peter's shoulder. For that one moment in time, I felt like I was by the ocean. The traffic sounded like waves to me, and the wind reminded me of an off shore breeze. The birds were singing in the background as well. While sitting and away from Mattie, I also spent time in silence crying. So in essence, I went to the island with a terrible migraine (despite being on medication), but by the time we completed our walk, I felt better. It was a needed escape for fresh air, time together, and to regroup. Caring for a sick child is all consuming, in the process it is easy to forget about yourself and your marriage. Fortunately Peter and I have known each other a long time and were good friends first, but I can see how cancer could destroy relationships easily.

After our walk, we went out to lunch together and continued talking and sharing stories with each other. It was a lovely afternoon, and we are grateful that Liza can give us this time! When we got back home, Mattie did not want Liza to leave. Which is always a great way to gauge how Mattie feels about someone! Mattie played with his hotwheel cars later this afternoon and even had a visit from JP (our neighbor) and JJ (our resident Jack Russell Terrier). JJ celebrated his first birthday yesterday. I can't believe how he has grown, it seems like he was a puppy only yesterday. JP brought Mattie a wonderful pizza and JJ enjoyed some of the crusts with Mattie.

We want to thank the Peterson family for a lovely dinner. Thank you Karen for the homemade lasagna, bread, and goodies! We so appreciate your support and kindness.

Peter and I still have to pack for the hospital. In addition, we have a central line dressing change ahead of us. One of our least favorite Sunday night tasks. Mattie will head back into Georgetown Monday morning. He will be there a week, receiving Doxorubicin and Ifosfamide. But Mattie knows next week is his birthday, and despite going back to the hospital he is very excited. In all these months of treatments, Mattie has never fought me when I told him he had to go back to the hospital. There are probably a lot of reasons for this, such as my honesty with him, the fact that I haven't left his side, and he trusts us. But the other vital factor is Linda. Linda has normalized the PICU experience for Mattie. Linda has become a trusted friend of Mattie's, and never underestimate the power of friendship. The community of HEM/ONC nurses, Jenny, Jessie, Linda's interns, and several other Mattie supporters make this harrowing pace more tolerable.


I would like to share a message I received from my friend Charlie. Charlie wrote, "Saturday's blog was all about community and connections and what can be accomplished when a dedicated group of people put their minds and talents to working together on a project. The lovely part was the inclusion of the children's thoughts and ideas as well as the parents. How often do we plan things without asking the recipients what they need or want. Then we are disappointed that what we have so carefully crafted or planned does not work out. I was impressed to see that this was not the case. I thought the art was lovely and the poetry wonderfully expressive. I am sorry it was not covered by the local newspaper as it would certainly be more uplifting and meaningful news than much of what we are reading now! It was great to hear that Mattie is beginning to find his way back into the web of family connections, to eat with you and to say grace. These rituals are so important but we tend to overlook them until they are not there. May his willingness (as well as the ability) to do so, continue to increase as you approach the end of the treatment."

I end today's posting with a story Charlie shared with me. It is entitled, The Kindness of Strangers. I have never heard of Cameron Stewart, but his mission is an interesting one. I am not sure you can self impose kindness on others, but I certainly admire the spirit behind it.


THE KINDNESS OF STRANGERS - by Michael Freeman


GOOD DEEDS: Teenager Cameron Stewart is on a mission to make a million – and give it away – before his 20th birthday

‘I WAS IN this café the other week,” says Cameron Stewart, “and I was buying an ice-cream. So I gave the guy at the desk a fiver and said, the next person who orders an ice cream, tell them it’s on the house. Tell them it’s free, and this will pay for it.”

Cameron Stewart is an 18-year-old from Holywood, near Belfast, and this sort of thing is exactly his forte. He is the proprietor of Ark clothing. The acronym stands for Acts of Random Kindness, and the idea is to encourage wearers to perform, as his website suggests, “One Ark every time the clothing is worn.” It’s sort of like putting on a superhero costume, except your superpower might be the willingness to give up your seat on the bus.

The point, says Stewart, is to change the way people behave. “In the world, everyone is just out for themselves,” he says. “And to an extent that works.
But I think when you start to put yourself last, you realise that it is the best way to live.” So the clothes are really just a prod in the right direction. “I want the logo and symbol to inspire people. Hopefully people will see it and recognise it, and think ‘Oh yeah – I should really do something for someone’. That’s the idea.”


He shows me one of the Ark tops. Each one sold has a cardboard tag, personally attached by Stewart, with one suggested act of random kindness. They read a little like the cards in a Monopoly game. This one says: “Pay for a random pump at the petrol station. This could be a costly one – but imagine if someone did it for you.” As he shows it to me, he can’t resist a little salesman’s pitch. “You can see, can’t you,” he says, “they’re class quality.” It does look like a nice shirt.

So did the clothes come first, or the concept? Was the idea always to change the world? “No,” he says. “No, no, no. It was originally going to be just for Cameron’s profit. And for me to be a millionaire by the time I was 20.


But then I realised that it’s more fun to give money away than to store it all up. So it changed to being a millionaire by the time I was 20, and giving it all away.” All the profits from Ark clothes go to charitable works – basically, acts of kindness on a larger scale. “When the whole business was building up, I made a group on Facebook,” Stewart says. “There are about 500 or 600 members now. And just before Christmas I sent out a message saying, if you see a need anywhere, just e-mail me and we’ll pay for it.”

So what have they done so far? “One girl e-mailed and said: ‘There’s a woman I work with who’s recently had a child. And she was back to work within a week of having the baby, because she doesn’t have any money and she’s really, really struggling.’ So I gave her some money, and they made up a Christmas hamper and delivered it. We did a few hampers.” The group also delivered presents to a Belfast homeless shelter.


How did he get started in the clothes business so young? “Well, when I was in school, I was an entrepreneur at heart,0 he says. “I could sell anything, and I always tried to sell anything. Just for the fun of it, I guess. And I started buying designer clothing online, and selling it online. And then from doing that, all these Chinese suppliers e-mailed me, so I ended up getting this massive list of factories in China. All these contacts.”

When he came up with the idea for Ark – and after his exams were over — he went to China himself to check he wasn’t buying from a sweatshop. “Thankfully, the first guy I met was just fantastic, and the factory was great. We drew up a contract and got 600 shirts ordered. It took a week.”


This is all highly creditable. But, I ask, doesn’t he miss normal 18-year-old activities? “I do miss Xbox and all that kind of stuff,” he says. “I would love to sit and do that all day. But I think this’ll be far more rewarding, even though it means answering e-mails all day.”

Cameron is sceptical about the idea of going to college. “The businessmen I aspire to be like don’t have degrees. They just started off. A lot of my friends have gone, but most of them are still based in Belfast, so I’m still kind of living that life. Apart from business meetings, and bank manager stuff, and all that.” http://www.arkchangeyourworld.com/