Sunday, June 14, 2009

Sunday, June 14, 2009 -- No more days to count down. Lung surgery is tomorrow!

Quote of the day: "Being generous of spirit is a wonderful way to live." ~ Pete Seeger

For some reason I couldn't get to sleep on Saturday night, and I did not fall asleep until after 3:30am. My mind was racing and I feel stress in places I did not even know stress could exist. Peter and I live an existence that is beyond difficult, it is beyond frustrating, it is simply exhausting, life altering, and there are times I get mad and angry that we can't live a normal life anymore. We live from one crisis to the next, one bad test result to the next, and the all time worst, one surgery to the next. I am tired of seeing Mattie's body cut up, I am tired of seeing and hearing pain, and I am deeply angry that Mattie can't be a healthy seven year old boy and Peter and I can't have a more typical parenting experience.

We had a slow start to the day. Peter's parents came over this morning and Barbara cooked us breakfast again. I tried to sit outside and eat, but I just couldn't eat. The energy it took to eat wasn't worth it to me. So I gave up. Under intense stress, I start shutting down verbally as well. So I have no doubt I wasn't much fun today in terms of company, and my fuse was VERY short. Or non-existent. I decided to try to rest after I attempted to eat something, but I couldn't shut down either.

Instead, we decided to get Mattie out of the house and take him to Roosevelt Island for some fresh air. This has been a nature park that we have always loved, because it literally is in the heart of DC, and yet when you are on the island you are transported into a simpler time where you can appreciate the sights and sounds of nature. Mattie was very happy to go on this walk, but what started out as a great idea, turned into some page out of the Bible. All we needed were locusts today, and I would have given up and said that God was trying to tell me something. Because of all the rain we have received lately, there was a lot of mud on the island. Well as Dr. Bob said very eloquently tonight to me, "wheelchairs are NOT meant for off road driving." Very true! We proved that well. Mattie's wheelchair got stuck in the mud and somehow as Peter was pushing the chair out of the mud, Mattie went flying out of the chair. I could see it happen, but there was nothing I or Peter could do. Mattie landed on the ground and was hysterically screaming and crying. He was frightened, shaken up, and complained of tremendous pain in his right foot. He eventually calmed down, but Peter was upset, as was myself, and his parents. However, Mattie is a trooper, and put himself together and continued on the walk. This was more than enough excitement for me for the entire day, but no, it did not end there. As we were walking on the boardwalk, three trees fell down and blocked the boardwalk. Instead of turning back (which would have meant going through the ominous mud again), Peter carried Mattie over the fallen trees, and his parents and I carried the wheelchair. I took pictures of this, because I felt my description couldn't do justice to the actual experience. Needless to say, I felt as if a message was being sent to me today. Doing things with Mattie is naturally more complicated these days, but after today's experience I became even more fearful of attempting to do "normal" things with him alone. Why? You need to understand that I am physically drained and sleep deprived. I don't have the stamina I once had before Mattie got ill, and if any of the things that transpired today happened to me while I was alone with Mattie, I am not sure what I would have done. In addition, I also couldn't help but wonder if God was sending me a message about tomorrow, that our upcoming surgery is going to be another battle to overcome which will require inner resources that I may not even know I possess.

As we were leaving Roosevelt Island, I wanted to take a family picture since Peter's parents are heading back to Boston on Monday. Mattie however, wasn't in the picture mood, and clearly did not want to cooperate. In the picture you can see Peter's parents, Barbara and Don, Peter, and Mattie.

After our walk, we headed home and gave Mattie pain medication. But one thing was clear, I had to get out of the house. I felt like a caged rat, and knowing the trauma in store for us this week, I only grew more agitated. So I decided that Peter and I would go out and Mattie would stay with his grandparents. However, Mattie would not let Peter leave. This can happen when Mattie gets frightened, he becomes clingy and even more demanding. So Peter stayed behind. Normally I would have felt guilty for leaving Peter behind while I went out, but not today. Today, I literally couldn't move out the door fast enough. With me I brought a whole stack of note cards and stamps, because there were notes I wanted to write before the next battle sucks the remaining life out of me.

When I got back home, we all had a lovely dinner together. We want to thank the Lee's for a wonderful home cooked dinner. Thank you for thinking of us and for baking cupcakes too. Before we headed to the hospital, Mattie went outside and caught a couple of lightning bugs with a bug vacuum his grandparents got him. Mattie couldn't wait to show me his new friends. He wanted to keep them, but we insisted that he let them go. None the less, I was happy that he was able to finally experience the beauty of these fascinating creatures. We then said good-bye to Peter's parents and we were off to the hospital.

We are now checked into the PICU and are trying to come to terms with what is upon us tomorrow. I am happy we are here the night before, because our level of stress is so high, we do not need any additional challenges like driving to the hospital and going through admissions tomorrow morning.

We feel truly blessed to have received so many wonderful e-mails of support from all of you. I was so touched to hear that there is an osteo family in Australia following our blog too. In fact, several of Mattie's HEM/ONC nurses have written to me as well letting me know that they are praying for Mattie! I appreciate all of you who are going to wear your wristbands and/or t-shirts tomorrow, this means a great deal to us. My goal is to try to write periodic updates on the blog on Monday, like I did for the previous two surgeries. So please stay tuned. Needless to say I write tonight's blog with many emotions such as fear, sadness, and anger. I want to do whatever will support Mattie, but I have to admit that doing this comes at a huge cost to Peter and I, we are experiencing and LIVING his trauma, and living through our own as well.

I end tonight's posting with three messages I received today. The first one is from my friend, Charlie. Charlie wrote, "I know all of us who read the blog were thrilled to hear about Mattie's day on Saturday. I think we often underestimate our children's ability to understand and empathize with those who need our help and if we offered our children more chances to do good deeds, we would be amazed at their caring spirits. It sounds like everyone had a great time and you and Pete got to have some relaxed time and some fun as well. As you said, this is how Mattie's life should be on a daily basis and yet this day stands out for its rarity in the past year. A sad commentary about the impact of illness, especially childhood cancer, on the life of a child and his family. The pictures are great and yet they show what life should be, not what it is currently is and that puts an overlay of sadness on the joy of the day. Going into Monday and the impending surgery, all of us who know you, Pete, Mattie and/or who have been connected in some way to Mattie's story will be praying for him and you tomorrow."

The second message is from my dear friend, Amany. Amany and I met at the George Washington University and we both survived a doctoral program together. Amany wrote, "Dearest Vicki, There are so many things I want to tell you...First, I will be wearing the t-shirt, bracelet and saying a prayer tomorrow. A lovely idea and please know that so many of us will be with you and Mattie and Pete in spirit and love. It broke my heart to read the blog and feel your tears--I cried too and am so sure so many others did as well. It isn't fair and I TOO HATE OSTEOSARCOMA!!. It's vicious and wrong and I"m so deeply sorry this is your reality. So many of us wish we could change that... Vicki--I know what you have to cope with is unimaginable and the hardest thing anyone could ever have to deal with, but I also have the utmost faith in the three of you. You have a courage and strength I have honestly have never before encountered. I wish to God you didn't have to be so strong, but thankfully just when I can't imagine anyone having the strength to go on, I read the blog, hear your pain but also hear your determination and find myself in awe all over again that you continue to fight in the midst of the devastation. It speaks volumes about who you are. Vicki--I also wanted to share something with you. Lorraine wrote that so many people at the March talked about what a phenomenal teacher you are. I have heard that so many times before when I had the privilege of guest lecturing at your classes. So that was no surprise to me to hear that again at the Walk. But what I want you to know is how grateful I am to you for all that you taught me, but more importantly for being one of the biggest reasons I never gave up on the doctoral degree. Vicki, if it hadn't been for you, I have little faith that I would have finished. You always encouraged me and your support was central to my not giving up. For that, I will be forever grateful. It is that tenacity that will be what gets you and Mattie and Pete through tomorrow and the days to come. It is powerful, compelling and not to be underestimated--I know, because it made a big difference in my life. Tomorrow, please know that we will all be with you in spirit,prayer and hope. I will be sending positive energy and prayer and try to give back what you gave me and have given so many others. Please give my love to Mattie and Pete and know you are loved, admired and appreciated more than words can say. I love you and believe in you. You have always been my hero but "hero" has taken on a whole new meaning of late."

The final message is from a RCC mom and friend, Mary D. Mary wrote, "It was so nice to see you all this evening at our neighborhood picnic. I hope you enjoyed yourselves as much as possible. I'm so sorry for what a rough day you had on Friday, so sorry that you guys have had such an incredibly terrible year that no one deserves. I don't think there's a moment that goes by where I don't think about you guys at some point during the day. Tonight we are up with Emily as she woke up crying and is now tugging at her ear. I felt so bad for her, know we will likely be up most of the night, and then thought to myself, try to multiply that a million times over to what I can even remotely imagine you have felt this past year. My heart just aches for you guys. Oh what we would all give if Mattie had just an ear infection to deal with in life right now! And then, I read the blog. You are in such pain but manage to find the time to visit Ann's Mom and give her the special treat of a massage/manicure and made her so happy. It truly does feel so good to do something special for someone other than yourself; however, how you even had the energy is beyond me, especially after such a rough day. You are truly such a kind person. I'll occasionally send you an e-mail regarding something that happened in my day, such as when my Father was in the hospital, just to chat in general about how frustrating the experience was, and then you write back concerned about what was wrong with My Father, etc. just prior to Mattie having his bone scan. I did not reply back, as I didn't want to burden you with anything, but how nice of you to ask. You care about people and are truly inspirational and amazing. Your writing in the blog is incredibly powerful. I do not have the gift of words or great writing skills, but you need to know just how special you are. Grace and I exchanged e-mails today about being emotional about our children graduating from RCC this year. We were both mentioning how glad we were that we all met at RCC, how many wonderful people we have met at RCC. You know, I only had one year at RCC with Abby in the Playhouse Room when Mattie was in the Block Room; however, you were always so kind to me and always made a point to talk to me when I saw you outside the classroom. I guess I just want to let you know that you do a lot of wonderful things for people that do not go unnoticed. We will proudly wear our Mattie shirts and wristbands on Monday AND WE WILL PRAY HARD, for all of you. There's going to be a Mattie Miracle!!"