Tuesday, December 22, 2009

Tuesday, December 22, 2009 -- Mattie died 15 weeks ago today!

Tonight's picture was taken in December 2002, Mattie's first Christmas! He was 8 months old, full of energy and the picture of happiness. I think it is important to share these pictures because this was the essence of Mattie.... Alert, vivacious, in constant motion, and curious! When you look at this picture, there is absolutely NO indication that within this beautiful baby lies a killer, that we now know as Osteosarcoma.

Poem of the day: IN LOVING MEMORY - A Grief Poem By V. Villaseñor

We remember you
Even when the world forgets
We remember your smile
Even when we can't find anything to smile about
We remember your laughter
Even when nothing is funny
We remember yellow (FOR Mattie it was RED and ORANGE!) is your favorite color
Even when it hurts to see it brightly displayed
We remember your tears
Even when we tried to comfort your pain
We remember the precious sounds you made
We remember your smell
Even if we never smell it again
We remember how you felt
Even if we can't hold you
We remember you
Even when it hurts the most

As we reflect on Mattie being gone from our lives on this 15th week, I think this poem captures the essence of how Peter and I feel! WE REMEMBER YOU! We remember his infectious smile and humor, his beautiful eyes, his wit, his incredible energy, and the list goes on. All we have now are memories, but how I long for the days we could hold hands, hug each other, and smile together.

I woke up not feeling well today, in addition to having a chronic headache. Because getting sick over the holidays is a nightmare, I wanted to address this before I felt worse. So I started my day text messaging Dr. Bob back and forth. Yes Bob was Mattie's doctor, but I appreciate Bob's medical support through the aftermath of Mattie's death.

Today seems to be the day of reflections. I bumped into Mattie's preschool director, Kim, at the grocery store. We had a nice time chatting and REMEMBERING Mattie. Mattie grew emotionally at Resurrection Children's Center, and his teachers became an amazing support system for me. Kim and I reflected on Mattie's love of the snow and the sledding he did at the school. We chatted about the Foundation and even Mattie's Facebook page.

I was working with Ann today on all sorts of projects. I find that sometimes staying busy helps me tremendously, yet I am not TOO busy to reflect on how things are impacting me, or how I am feeling. Living with the loss of Mattie is like NO experience I have ever had before. It is almost hard to describe. I can get through the day, and it may even look like I am functioning, but throughout the day I am carrying an invisible weight on my shoulders. You can't see it, but I can feel it. It makes doing the typical tasks one does in a given day, challenging and requiring great effort. By the end of the day, the invisible weight of grief becomes harder to carry.

Tonight, I went to the Nutcracker with Ann and her family. I had never seen this version of the ballet before. It was performed by the Washington School of Ballet, and the performance had a DC twist to it. I enjoyed it very much, and of course any opportunity to hear Tchaikovsky music is always a treat. Ballet is a beautiful art form, that isn't always well supported or appreciated. But it was wonderful to see so many young children in tonight's performance as well as those attending it!

As it is Christmas week, I am deeply grateful that others in our life realize just how difficult a time of year this is for us. When I got home from the ballet, Peter's cell phone rang. Who was it? But Dr. Shad, the director of the Lombardi Pediatric Cancer Center. She is also the physician who was on call the week Mattie died. She helped us tremendously throughout Mattie's treatment, and also advocated for him in his death. Tonight, Dr. Shad called to tell us that she wants to give us a house in Duck, NC for the month of January. She wanted to know what we were doing for Christmas, and was worried we were going to be alone. She has offered to visit us this week, or help us in whatever way we may need to get through the holidays. When she offered us the house in North Carolina, my initial thought was I can't picture Duck in the winter time. However, I told her I would think about it, since we took Mattie to Duck three summers in a row. It is an area that holds special meaning to us. I have to pause in amazement over the kind of doctors who treated Mattie. Bob is my first line of medical defense now, Kristen (Mattie's oncologist) is our friend and writes to us every Tuesday, and Aziza (Dr. Shad) is trying to care for us after Mattie's death. Mattie was the patient here, but his doctors haven't abandoned us, and I felt that this kindness needed to be mentioned. These gifts of kindness to me are better than anything you could buy me, and I reflect on these things at Christmas time.

My mom wrote to me today, and she has started a new series for the blog this week. Reflections on Christmas. Peter and I found tonight's message very touching and I am happy she captured this special Christmas of 2007. I think hearing her perspective is important and I hope you enjoy this story as much as I do.

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The Best Christmas Ever By Virginia R. Sardi

The best Christmas I ever had was in December 2007 with Mattie and the rest of my family, Mauro, Vicki and Peter. I will always remember that Christmas as one of the happiest I ever had and if I could relive any part of the past, I would chose to rewind the clock as we do our videos and DVDs to repeat our vacation together again and again and again! It was perfect from beginning to end and started with a reunion at the Ft. Lauderdale Airport with Mattie making a running leap into my arms and giving me a great big, loving hug. Have you any idea what that meant to me then and what it means to me now in retrospect? Time with him was always precious and fleeting because of the geographical separation that kept us apart and every first encounter with Mattie was a moment to reflect on how much physical and intellectual change had taken place since the last time I had seen him. As in the past, I immediately noticed how much he had grown but this time, I witnessed how much more he anticipated the days ahead because I could sense, he understood he was no longer confined to mostly indoor activities as in Washington, DC but was free to explore the great outdoors where he could romp on the beach and discover for himself all of its hidden treasures. At the airport, I already knew that being five made a difference in how he perceived his new environment and that he was very excited about getting started on his Christmas adventure.

Mauro and I arrived in Florida from Los Angeles earlier than Mattie and his family because we had a longer flight and wanted to be rested and ready to welcome them at the Fort Lauderdale Airport when they arrived. It was one of our greatest pleasures to see their smiling faces as we greeted them to sunny Florida from the cold chilly Northeast. You could feel the happiness in the air as they contemplated the leisure time to be spent at the beautiful beachfront of our hotel basking in the glorious Florida sunshine to their hearts delight. In the past, our reunions always took place a day or two after Christmas, but in 2007, I was determined that it should include Christmas Day itself. Was it a premonition of impending tragedy or a spontaneous urging brought about by a perceptive sixth sense? I will never know the answer to that but I do know that in retrospect, I made the right decision for the memories I have of Mattie on that Christmas vacation are priceless treasures that I hold very close to my heart.

One of the most significant recollections of the trip involved Mattie’s adventures on the beach. Vicki had vacationed with her family on the outer banks in North Carolina for a few summers when Mattie was only a little baby. Although we did not go with her, Vicki explained that Mattie disliked the beach and cried when he was placed on the sand. He didn’t like its texture, unfamiliar and strange, and found the whole experience frightening especially when accompanied by the sound of big, overpowering waves that came crashing down all around him. By the time he came to Boca Raton, he had worked out his fears and realized the extraordinary possibilities that a day at the beach could offer. He figured out that sand when mixed with water can be shaped into a building block when using a pail and was a perfect medium to use to construct his “pretend” castles and forts with towers, moats and roads for people and cars, of course. He became the master at mixing the sand with water to make the sand pies necessary for a good foundation. His level of concentration and creativity were amazing and were appreciated by other beach guests who admired the complexity and originality of many of his designs. Sometimes others would join in the fun and he loved all the attention his projects received and the opportunity to explain what he made and why he did it. He was the budding seaside artist of Boca Raton and engaged the talents of his Mom and Dad to implement some of his more ambitious plans but always with an eye for making something original. On this trip, we took Mattie to the Florida Everglades for a ride on an air boat through the swamps. The mix of water and muck was a sight to behold and as we boarded this open air boat navigated by a female Captain, Florida’s version of Annie Oakley, who advised us to put cotton balls in our ears to help block the engine’s loud noises and once we got started we understood just how noisy these boats are because the cotton balls helped little to protect us from the wicked sound of the whirling engine. It was an experience being aboard the boat with the wind whistling in our hair and Mattie and I hunkering down together to protect ourselves from both the noise and the wind. Captain Annie seemed fearless and took us out far from shore in search of alligators. Along the way we spotted turtles, herons and other varieties of natural wildlife but Captain Annie was determined to find that elusive alligator for all of us to get a close look at in its natural habitat. A denizen of the ‘Glades herself, she could track them down easily because she was familiar with their habits and sure enough she found a few that circled around our boat which had come to a stop. One alligator actually came right up to the boat and looked in at us. Mattie was fearless, jumped up from his seat to get a close up look at the alligator for himself. He learned that day that alligators are not very smart but can be very dangerous because of their strong snapping jaws. He was impressed with his proximity to a wild animal and went on to actually see and touch a python for himself at a nearby wild animal park. Needless to say, our little artist on the very next day went to the beach to fashion an alligator made out of sand. It was almost a replica of the one he had seen on Captain Annie’s boat, just a little smaller. Mattie exhibited all his creativity and passion for life in his nimble ability to connect all of his experiences by synthesizing adventure, exploration and artistic impulse into one unified and uniquely identifiable expression of his personality. Everything he did was tied to his perception of nature, his environment and his desire to recreate a vision of his surroundings so that he could capture for others what he saw and what it meant to him. His love of the beach encompassed all of the seaside objects to be found by a curious little boy who both plays in the water and is at the same time intrigued by what the tide sweeps up to the shore. He incorporated seaweed into his Castle structure using it for landscaping and he collected seashells, sand dollars and ocean stones on every outing. He also was on the look- out for jellyfish that were fascinating to observe but was cautious enough not to get too close to avoid getting stung. I have a drawer in my bureau where I keep a little stone that I collected with Mattie on the beach one day while we were walking and making our selections of things to take back home with us. It is small, white and gray with a hint of blue, like the ocean itself. When I showed it to Mattie, he loved it too and pointed out that the water had made it very smooth and nice to touch. In preschool, Mattie was known as Mattie Magnet to his classmates and it was appropriate because other kids were always attracted to him. These days, when I want to feel closer to Mattie and reminisce about our Christmas vacation together, I open that drawer, pull out the stone which always reminds me of the ocean with its bluish cast and it makes me think how much it is like Mattie himself, smooth and unique with a pure and natural quality that attracts you just like you would expect a Mattie Magnet would!

While we were physically active trying to keep pace with Mattie, an almost impossible task, we had to figure out how to celebrate Christmas and to prepare for Santa’s arrival in Boca Raton which was a major importance to Mattie.. How we handled Christmas Day at the hotel on a bright, beautiful sunny day in Boca Raton will be the subject of the next installment because it is a major part of why Christmas 2007 was the Best Christmas Ever!

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I would like to end tonight's posting with three messages. The first message is from Mattie's oncologist, Dr. Kristen Snyder. Kristen wrote, "In Northern Michigan today...I might as well be half a world away. Yet, it is still a Tuesday, the mark of another week without your Mattie. This week will no doubt be difficult for you. Know that there are many of us out there, supporting you this holiday season, thinking of you and wishing you peace and hope this Christmas. Thinking of you today and always."

The second message is from my friend, Charlie. Charlie wrote, "I am sure the stress and the grief surrounding Mattie's absence from this of all holidays, is making your headaches even worse. I do wish there was something I could do to relieve the pain you are feeling. All I can say is that you have to do your best to take care of yourself even when you don't want to; get a massage, meditate, do something loving and caring for yourself and give yourself the space and permission to mourn. I completely understand what you were saying about children giving us another perspective on things; as I dug out (multiple times) over the past few days (mutter, mutter), I kept saying to myself, snow is for the young, I would not mind this so much if I saw some of the neighborhood children out enjoying this. However, all the children on my block have grown up and moved away, including my own, so the snow just isn't much fun for me. I know we are heading toward the New Year and you are rightfully concerned about what you are going to do with your future, but I suggest you give it some time, don't make any irrevocable decisions and be as patient as you can with yourself. As I practice today I will send you the energy and the peace that I find in it."

The third message is from my friend, Angie. Angie and I met at Boston College, during graduate school. Angie wrote, "I send you greetings at this season. I think of you and Mattie, EVERYDAY, but especially so at this time when it must be so difficult for you. Although I can't imagine what it is like to lose a child, the loss of my mom changed the holidays for me. My parents used to love this season, and so it became my favorite time of year, too. Now, I am sorry, but honest to say, it has become my least favorite. Oh yes, now that some time has past, I do go through the motions (sometimes and sometimes not), but it is always with an emptiness inside. You, Peter and Mattie are to be most admired for your courage, love, support and warmth. You are what the true meaning of Christmas is all about. Vicki, your participation in the holiday traditions with your friend's children is truly wonderful and amazing. Your table decorations were beautiful. You have a flame within you that warms all those who know you. I know you must have a special angel behind you that continues to encourage you and give you the strength under the most difficult of circumstances. What better gift could all of you have given than the Mattie Foundation? You are what the true meaning of Christmas is about. You have given so much to others in need, in spite of your own loss and needs! You are an example that we all strive to emulate. I wish you many blessings during this holiday season and for the new year. No one deserves them more than you two. Vicki, I liked you from when I first met you, but, at that time, I didn't know how special you really were!"