Monday, September 7, 2009

Monday, September 7, 2009

Tonight's Mattie creation features a lighthouse card that he made for me to celebrate my birthday! Mattie knows that I love lighthouses and that we visited many with him in his lifetime.

Quotes of the day: "A life lived with so much love never really ends but goes on forever in the hearts of those who remember. By love they are remembered and in memory, they live."

"Angels are like diamonds, They can't be made, you have to find them. Each one is unique." ~ Jaclyn Smith


"All God's angels come to us disguised." ~ James Russell Lowell



Our day started out with a sad scene. Mattie's fish, the special gift my parents got Mattie yesterday, died! I knew this was an omnious sign today!

Mattie had a very difficult start to the day. His blood pressure has been dropping and is dangerously low, and he had a coughing fit, which left him gagging and unable to catch his breath. He was deathly scared, and when Dr. Shad and Kathleen (Mattie's outstanding HEM/ONC nurse) saw him, they mobilized into action. In reality what happened next moved so fast, it was almost a blur. Mattie was in minutes being pumped up with pain medications and Versed (for anxiety). Now that I can reflect on the morning, I am so thankful we are in the hospital. Because Mattie couldn't possibly be cared for humanely at home based on the symptoms he is presenting. It is ironic that Mattie seemed to know this, and had a better feeling for his condition and his decline than Peter and I. Once Mattie received all this medication, he asked if I could snuggle with him, which I happily did. However, Mattie is being kept in a comfortable state, so therefore he really isn't talking and spends a lot of time sleeping. The Mattie we knew is NO longer!


Dr. Shad came to the hospital early because she felt that the end was near for Mattie. She stayed at the hospital all day, and we had a great deal of support from the HEM/ONC nurses (Kathleen, Tricia, and Miki). We were also surrounded by our THREE angels today: Ann (our angel of HOPE), Linda (childlife specialist and our angel of caring), and Debbi (our sedation nurse angel). They all came to support us and Mattie. My parents sat with us as well, and this whole scene of watching Mattie slowly dying is heart wrenching and at the same time surreal. How can my healthy, active, bright, and spunky son be dying? I see it happening, but it is SO hard to accept!

We want to thank Tamra and Liza for bringing us breakfast this morning. We so appreciate your families supporting us! We also want to thank the Fortune family for a nice lunch. Eating wasn't easy for me today, but I had a lot of people around making sure that I actually did. Ann took me outside to eat something, and I needed that break, because sitting and watching death, and the death of Mattie almost takes your breath away.

Peter and I spent a great deal of time today monitoring Mattie and also talking with him. In fact, when everyone was visiting, we had solemn moments, but also moments of laughter. Laughter because Mattie was a very humorous fellow! Kathleen told me that the nurses love Mattie, but they also love us. That Mattie has left a legacy, and his love will always live on within us. Mattie did not go to school this past year, but in a way he went through the hardest school of all. The school of cancer, which shows you the most vulnerable and raw sides of life. In fact, it has left me so raw, that I emotionally am not the same person anymore.

Mattie's nurses all came in tonight at their shift change to kiss and say good-bye to Mattie! It was very touching. Kathleen told me that even though Mattie isn't awake, he can hear us, and that he worries about us and is holding on because he knows we do not know how to say good-bye to him. So tonight, Peter and I mustered the energy to talk with Mattie together. We told him we loved him, were proud of him, that he did a great job fighting the cancer, but now he is in control and can decide when he has had enough and wants to rest. That we will be okay, and that we will always, always love him. We told him that we couldn't have asked for a better son, and that he was going to a place where he would be at peace, able to run and play, and meet up with family members and friends who love him but whom he has never met. My sign off tonight, as it always is to Mattie was, "Una Moon loves Mooshi Moo." Mattie coined the nickname, Una Moon for me, and he is my Mooshi Moo.

It is hard to say how long Mattie will be with us. It could be hours or days. But it is no longer weeks! His whole disease has been one crisis after another. His cancer required three major surgeries, 11 months of chemotherapy, and intensive physical therapy. However, there was NO break between treatment and recurrence. In addition, even death is not an easy process for Mattie. It has hit him hard and hasn't given us the chance to talk as a family. This year has left me shell shocked, questioning everything about life and the future, and the true purpose for our lives. Mattie is being kept comfortable, which is a blessing, because the sounds coming out of his body and lungs are frightening. I doubt we will sleep at all tonight! I am saddened that Mattie will be unable to go on a planned beach trip that the Lombardi Clinic arranged for us on September 13 through the Foundation, Believe in Tomorrow. It wasn't meant to be clearly. One thing I do know is I hate Osteosarcoma with every fiber of my being. I have seen Mattie suffer way too much this year, and this suffering will always remain a part of us.

We would like to thank Tamra for a wonderful home cooked dinner tonight. Tamra you are way too generous with us! Thank you for the hug and the support today. My head is pounding tonight, my heart is heavy, and I am truly and deeply saddened over the pending loss of Mattie. Ann, is headed back to spend time with us at the hospital this evening, and despite losing her brother to cancer almost two years ago, I appreciate and value her commitment, support, and love she has for us in order to be able to walk through this with us now. So I end tonight with six messages I received today.


The first message is from my friend, Charlie. Charlie wrote, "Thank goodness for the gentle loving care of people like Jey, Kathleen and Debbi and the support of friends like Tamra and Ann. I can feel the love and warmth surround you through the words in your blog on Sunday.I know the situation is impossible, horrible and awful and yet Mattie's spirit shines through it; what a testament to you and Peter for the son you've raised. I agree with Debbi, that Mattie's home is where you and Peter are and where he feels his physical needs are met. Your apartment is a place he loves but has moved beyond; this way it remains a place where Mattie lived while the hospital bears the pain of his passing. I believe you have a "mission" after Mattie's death; I think you may see glimpses of it now but don't worry if the whole plan is not immediately visible...it will come. I wish you strength to continue to do what is needful for Mattie; I pray for all of you many times each day. I hold you gently in my thoughts and may the One who sees all hold Mattie gently in his arms and keep the pain at bay."

The second message is from Rich Yep. Rich is a fellow SSSAS parent and the Executive Director of the American Counseling Association (of which I am a member, and have been involved in leadership activities with the Association). Rich wrote, "Just as thousands of others do, I continue to read your blog each day. And, after each installment, another prayer is said for Mattie, Peter and you. The other day, I was invited to speak in a few months to a group of counselors out in the Midwest. I asked about the theme of the conference and was told that it was “counselors and resiliency.” I immediately thought of you. This then led me to frame the long ordeal you have faced as something akin to being entered into a triathlon. The first leg of the triathlon were those first ten or so months when you and Peter did all you could to learn about Mattie’s disease, how to cure it, and how to advocate for him within the medical community. The second part of the triathlon was when you found out that there would be no cure this time for Mattie. At this point, you moved from hoping for a cure to how to make the remaining time as comfortable as possible for Mattie.The third section of the triathlon has yet to be run. This will be how you and Peter will carry on when Mattie has been called to heaven. Despite knowing that Mattie will no longer be in such pain, it will still be a devastating loss for those who are left behind. My thinking is that the resolve, inner strength, and resiliency that you and Peter possess will help to carry you through. And of course, you have legions of supporters and we are willing to help in any way possible. Vicki, we are all honored that you have shared your “triathlon” with us. Despite how weary you are, you and Peter continue to amaze us with how you continue to reach down (when it seems like there would be nothing left) and you still find the energy to advocate for Mattie. It is no wonder that he is such a special little boy given that you and Peter are his parents."


The third message is from Mattie's preschool director. Kim wrote, "You are constantly in my thoughts. Constantly. A number of years ago, a gifted teacher that worked with me, left RCC and spent a year volunteering full time with hospice. I will always remember a conversation I had with her after that incredible experience. She told me that one of the life-changing lessons she learned was that dying is one of the hardest and most challenging things that a body – and the spirit that gives life to that body – can do. She said that with disease, the body doesn’t just simply let go. It fights, and fights and fights. And the struggle is hard beyond imagining. She said it takes real heroes to go through it. What were once thought-provoking words have now taken on a cold and jarring significance – because of what you and Peter and Mattie are going through – because of what you have allowed so many of us to share and learn from. Vicki -- you, Peter and Mattie are all heroes. God knows, not heroes by choice (I suspect few real heroes are) – but heroes nonetheless as you stalwartly and unswervingly face what has to be faced. As you bravely make decisions that no human should have to make. But what I really want to say to you this morning Vicki, is that you are a good mother. You are a good mother. I have no higher blessing to give you."

The fourth message is from one of my former students. Betsy wrote, "I am so sorry that the cancer is taking over so quickly. I can't fathom the agony of watching your child go through this. I do understand how helpless you feel. Just know that you are doing the right thing by following Mattie's lead, keeping him in the place he wants to be, and keeping him as peaceful as possible. Understand that Mattie knows and feels your intense love and that your love, above all, is what will help him to leave this world in a state of peace. I went home and stayed with my dad for the last 9 days of his life. Each day I sat with him and helped him review his life (the cancer had spread to his brain so he was struggling with remembering things). I held his hand, rubbed his head and just made sure he knew how much he meant to me. This was so helpful to me when he died. I knew that he knew how I felt about him and how important he was to me. I knew that he went to the next world knowing he had been a great dad. This was so helpful during the grieving process. Like my dad, Mattie knows how much he is loved by your constant dedication and perseverance. Please know that you are bringing him great happiness through your love, even though he can't show it right now. Continue to let him know how you feel about him, try to talk about great memories you've had together, what an incredible son he is and how you've become a better person because he is part of your life, and always will be. My thoughts and prayers continue to be with you and your family. My heart goes out to you and Peter."

The fifth message is from Mattie's SSSAS art teacher. Debbie wrote, "I am in my studio reflecting on the magic that Mattie shared with us on the day he painted here. I am playing the same Carlos Nakai CD I played that day. What I see is the precious image of Mattie swirling around like a leaf in the wind with his arms stretched out as much as he could. I watched his little feet glide on the shiny bamboo floor like they were moved by a soft wind. He tilted his head back like he was trying to let the sun shinning in the skylights touch his face. He danced three different times during the painting session. He painted with great energy and intention. When he said..... "It's done. It's perfect." I knew it was. As a person who has spent 40 years of life trying to make children feel safe enough to be free creative spirits, perhaps this was my most fond moment. It remains with me now and always. Mattie's image is burned in my mind. His creativity, spirit and happiness will forever be felt in this studio space. I look left every time I get to the top of the staircase. Although the space is devoid of "Mr. Sun" and dancing Mattie, I see his image vividly. His spirit and memory will be with me in this place forever. His brief presence has made this a sacred place. "


The final message is from a former student. Tess wrote, "Once again I am overcome with such a flood of feelings for you and your family, and feel I must share with you how much you are in my daily thoughts and prayers and tears. I await the blog each night with emotions running high, and drink up your news and reflections with a heart full of love and pain and grief. I am so inspired and equally distraught by everything you are handling - being exposed to this kind of human experience, even just through your blog, is an incredible eye-opener and lesson in love, community support, suffering, child wisdom, medical trauma, and the transient power of human emotion across the realms. I honor you Vicki, you have clearly been called for a higher purpose, one with a heartbreaking and unfair call to action, but I have faith that you are touching so many lives that need a reminder about life and love. What you have done for my own life alone is something I have tremendous gratitude for. My wish is that you will find some solace of your own after this horrifying and brutal journey - so much goodness on your part deserves goodness returned to you. You are constantly in my thoughts Vicki, and have my support and love in heaps and bounds. Your bravery and strength have blown us all away, and I hope that you three can have as calm an ending to Mattie's time on earth as possible. Thank you for sharing your daily ups and downs with us - what a bridge you have built between so many people. Wishing you continued strength to lead your family and carry yourself through this monumental challenge."