Friday, August 8, 2009

Friday, August 8, 2009 -- Thank you for visiting Mattie's blog today, it was hit 4000 times today! Amazing! Your support, love, and comfort mean a great deal to us!

Quote of the day: “I believe that imagination is stronger than knowledge - myth is more potent than history - dreams are more powerful than facts - hope always triumphs over experience - laughter is the cure for grief - love is stronger than death.” ~ Robert Fulghum

Peter and I started Mattie on a fentanyl transdermal pain patch last night. This morning, we both noticed that Mattie was very pale, was twitching in his sleep, and was smacking his lips together. He wasn't consciously doing this. Of course we both rationalized that these behaviors were probably due to the reintroduction of the narcotics to his system, but frankly after the news we received on Wednesday, our minds leaped to the possibility that the cancer has spread to his brain. So instead of taking any chances, we called Mattie's doctors. They agreed that this most likely was a side effect of the pain meds, but that we should keep an eye on it. After Mattie woke up, these behaviors disappeared and we haven't seen them for the rest of the day.

Peter and I want to thank all of Team Mattie (and Ann and Alison coordinating all the information) for mobilizing forces today to try to plan a wonderful boating event for Mattie. Throughout the year, Mattie's one wish was to have a boat, and be a captain of the boat. So today, several offers were generously given to us to help Mattie's wish come true. One for example, involved a special tour of a Frigate class Navy vessel, in which Mattie could help pilot the ship, and also meet several officers. It sounded like an incredibly generous and once in a lifetime offer. In addition, our friend Joy, also coordinated a special Potomac river excursion today on a private boat for Mattie (Thanks Joy!). However, to our dismay, when we told Mattie about the boat outings, he was scared, intimidated, overwhelmed, and refused to go on any of them. This caught us by surprise. We tried every which way to get him to consider these offers, but as he said, which he learned from me, "No means NO!" Peter and I were both upset, because the old Mattie would have jumped at this chance to go on a boat, but then we had to stop and reevaluate our own behavior with Mattie. Did we want him to go on the ship for us or for him? If he really did not want to go, we had to respect that choice, and come to peace with the fact that we missed the window of opportunity to make that wish come true. We are now in search of meeting whatever wish he would like. We all have our own preconceived notions of what contributes to good memories, but again, our wishes don't matter at this point, what matters is what makes Mattie happy.

I was talking to my mom yesterday, and she got me thinking. She wants to help us get something for Mattie that he always wanted. So I gave that some thought, and one thing jumped out at me. Mattie has always wanted one of those big battery powered electric ride on cars. We never took that request seriously, though we did use that as a carrot to inspire him to walk. We always told him when he walks again, this will be his big reward. Well clearly that moment will not come, so instead, Peter and I are heading out tomorrow, with the help of my parents, to buy him the car that he always wanted.

Early this afternoon, Mattie was visited by Bob Weiman, the head of Mattie's lower school. Bob introduced Mattie to several new magic tricks and taught Mattie how to perform a few. When Bob arrived, Mattie was in a bit of a funk, but Bob found a way to work through Mattie's barriers. In fact, Bob helped change the tone of the day for us, because after the refusal of the boat trips, all of us were in a mood. Peter really loves figuring out how Bob does his tricks, so Bob is always a good diversion for all of us. We can't thank him enough for his incredible support and care for our family, and it only saddens me that my family won't have many more years to interact with Bob on the lower school campus. I still can't believe what is happening to Mattie and to us. This is a precious life that has been cut short way too soon. Mattie has so many gifts that I feel he possesses and could share with the world, and when he dies, it will not only be a lost opportunity for us, but for all those he could have potentially touched. Thank you Bob for your generosity of time, skills, and support.

Today was not a good eating day for Mattie, and at the moment he is living on milk alone. As the afternoon wore on, I had to leave the house. I couldn't take it anymore. In fact, I feel at times trapped at home, with the pending feel of death in the air. Peter spent the afternoon with Mattie, and they built Legos and even did a Target run. Mattie came home with this hotwheel set that he truly loves, and he couldn't wait to show it to me when I got home later in the day.

Somewhere along the way today, I went to visit Ann's mom and dad. Mary and Sully are both very upset over the news of Mattie. For them it is like reexperiencing the death of their son. In fact, Mary told me she fell in love with Mattie as soon as she saw his face. Music to a mother's ears, and I cherish all these comments. Visiting Ann's parents, is in no way a chore for me. They have become my friends, and despite their own physical limitations, they really try to support and empathize with my situation. Well how could they not, they have lived my scenario already. After my visits, I met up with Ann, and chatted about a whole bunch of things. One thing is clear to me is that I have moments where I completely acknowledge that I am emotionless about Mattie's terminal condition. Personally, I don't think this is denial, but instead a coping mechanism to help me get through one day to the next. I feel right now that I have to be strong for Mattie, because we still have so much ahead to fight. I am doing battle with pending pain, and this frightens me. The worst form of torture is seeing your child writhing in pain, and you can't do anything about it. I dread this, I dread the conversation that I know will happen when he will ask me about his cancer, when he will ask me about death, when he most likely will ask why this has happened to him, and I could go on. This is NOT a conversation I wish upon any parent!

The mention of Mattie's funeral has been brought to my attention several times today. I know that I have to be the adult and come to terms with these big decisions. But today is NOT that day for me. Peter also talked to me about this tonight, and wanted to know my feelings on this. I told him to contact Jim Greenfield, the catholic priest who gave Peter and I precana and also baptized Mattie. I am so overwrought about this, that right now I don't want Mattie buried in a cemetery. I want him in an urn in our home. Peter is trying to persuade me not to do this, but I want Mattie with me, not somewhere where I can't be near him each day. I am sure my feelings may evolve, but right now, losing Mattie in the physical world is not something I can grasp.

Mattie and I had many tender moments throughout the day. At one point today he was sitting on the deck with me, and wanted to hold my hand. This is ALL very unusual behavior for Mattie, because normally he is all about moving and play. As I was holding his hand, I just couldn't help but wonder how long will I have this opportunity left? I worry about forgetting what Mattie looks like and his mannerisms as years go by. The mind has a funny way of blocking things out. I experienced this with my grandmother, who I was immensely close to, and grew up with. Once she died, I struggled to remember what she looked like, the shade of her green eyes, and what her voice sounded like. I don't want to forget these aspects of Mattie!

Tonight, Ann came over and camped out with Mattie. Mattie had Peter set the camping tent back up in our living room. While Ann was over, Mattie also was visited by Margaret, his first preschool teacher at RCC. Margaret brought over a glow station for Mattie to use in the tent tonight. Thanks Margaret for the visit and the support.

Mattie has a special rapport with Ann and the irony is, that while Peter and I were out having dinner, Mattie not only played with Ann but also fell asleep in the tent with her. Mattie is very comfortable with Ann and trusts her, and I wish I took a picture of them camping out together, but my mind isn't working to its usual capacity these days. Thank you Ann for being there for all of us, and being such a positive force in Mattie's life.

I can't thank all of you enough for your beautiful postings and e-mails. We read each one, and they mean a great deal to us. We received many, many e-mails today as well, and wish I could post them all. However, I would like to share five messages with you as I end tonight's posting. The first message is from my friend, Charlie. Charlie wrote, "I know yesterday was very traumatic for you and Peter. How can you make these decisions and then, how can you not? No one knows Mattie better than you and so no one else can begin to understand what is needed. I know I would offer my bone marrow, my blood, a kidney if that would help and I suspect most who know you and those who have grown to know you via the blog feel the same way. Unfortunately, I have nothing to offer that will extend Mattie's life. I know you are grappling with how to go on after Mattie dies but for now he lives and he needs you. That has to be your focus for now. I am sure you feel both numb and overwhelmed; make the decisions which have to be made, leave everything else aside and enjoy as much time with Mattie as you can. The decision you made to fight was the right one, you can see it in every picture on the blog graced by Mattie's smiles, read it in his growth as a person and the way you've touched so many lives. I only wish there were a way to spare you the pain every parent fears most and since I cannot, I can only tell you I will walk the rest of the way with you. You are as always in my prayers this day and every day; I wish Mattie as many sun filled, pain free days as possible."

The second message is from Mattie's preschool director. Kim wrote, "Reading your news, my heart shrunk, and exploded, all at the same time. How can this happen? I want you to know that over the past year, you have been a teacher in the truest, deepest sense of the word. You have given of yourself, unstintingly, to your family, to others that you love – and to many you have never even met. We have all learned so much about the things in life – and death – that are most important. I can only say thank you for the gifts that you have, perhaps unknowingly, given me. Yesterday, filled with grief, I spent my day at RCC doing what I could. The halls and classrooms felt cold and empty….. until I forced myself to fill them with memories of Mattie’s days in them. And, at last, I could smile for a moment. My love and heart continue to be with you. Do the best you can to take care of yourself and Peter and Mattie."

The third message is from my friend, Susan S. Susan wrote, "Ever since I last visited Mattie and we all danced around the hall to ABBA I have been waiting to check it out at the library. I FINALLY got it. I was listening to it today, thinking how much life has changed since that day. I will never hear any ABBA song again without thinking of Mattie. His strength, courage, and impishness!! His excitement over even the littlest things no matter what they may be. I remember the day we went to Harrison park. He is such a pistol as my dad would say. Anyway one of the songs I heard today was "I have a dream." It just really struck me, especially "I believe in angels, when I know the time is right for me, I'll cross the stream, I have a dream." It seems so fitting, that when the time comes that Mattie will become a very special angel, just as he was special to all of us down here."

The fourth message if from my good friend, Lorraine. Lorraine wrote, "I feel the need to write something to you, despite the 100+ personal emails you received just from yesterday, which of course you cannot possibly respond to, particularly now when time is so very precious. There's an enormous feeling of sadness, sorrow, and shock we're all feeling. There's a part of me that cannot being to imagine how you will get through the next minutes, hours, days, and weeks, let alone the months and years ahead. But there is also a part of me that believes the answers will come from Mattie. Mattie will guide you, Mattie will be your spiritual guide and he will help you in the deepest most loneliest, most touching, most gentlest and most saddest of ways, Mattie will help you with the answers. I think Mattie has some sense of how fragile a little boy he now is. There will come a time when he will ask you if he is dying and while this is the most horrific thing to think about and even write, I believe you will know what to say and that your words and your love and your gentleness with him will comfort him. He will know that you will really never ever leave him, that your love for him will always be inside of him, and he will also know that he will always be with you deep in your soul. Mattie will guide these huge life decisions that no parent should ever be asked to make, and his spirit will stay in your heart forever. Mattie must always be that big, beautiful, bright shining yellow SUN that you get your strength from in your darkest hours -- something no one can ever ever take away from you."

The final message if from my mom. My mom wrote, "Mattie looks so happy and beautiful in today's blog that it is hard to process the news that he has terminal cancer. That smile of his can melt hearts of stone and move people to tears because it is so warm and wonderful but alas the verdict is in and fate has decided that we are meant to appreciate its preciousness NOW for it is like life itself, fleeting and only meant to be with us for a short time. Think of all the good that Mattie sparked within each of us with his glorious sunny smile within this less than perfect year, and reflect on the many memorable happy times where he laughed, played, joked, created art wherever he went, entertained, performed his magic, made friends and packed in a lifetime of living in 7 short years and rose above his personal hardships. It is an astonishing accomplishment. Only 7 and he did all that! He is truly one remarkable little fellow!! Even as I write I know, that beautiful smile will linger on forever in my heart!!"