Tonight's picture was taken on August 5, 2009, the day Mattie's cancer was diagnosed as terminal. That afternoon, Mattie and I went out to the hospital rose garden, between testing sessions (ultrasound and CT scan). Mattie understood that something was wrong, and though I tried to down play things, Mattie was very intuitive and sensitive. On our way to the rose garden was this elephant art therapy statue. The display tiles on the elephant change on a regular basis and children and health care workers create these tiles. Mattie loved one of the tiles that was a picture of Curious George. It was created by Kathleen, one of Mattie's nurses, in honor of him. That tile always made Mattie smile. Smiling even on the hardest of days. To me Mattie was and will always be incredible.
Quote of the day: Grief can be a burden, but also an anchor. You get used to the weight, how it holds you in place. ~ Sarah Dessen
Peter and I got to Mattie's school around noon. The playgrounds were FILLED with children. Literally I felt like I was surrounded by mini Mattie's! In fact, one child in particular reminded me of Mattie's friend, Paul. Yet Paul is NO long five years old, he is 20! Nonetheless, I felt like I was right back in 2007, when Mattie was in kindergarten. Mattie's white swamp oak is thriving and looking beautiful. We put ribbons around all three of Mattie's trees.... or as I call it, Mattie's grove.
On this day, 13 years ago, Mattie died from osteosarcoma. It was a 14 month journey of high dose chemotherapy, limb salvaging surgeries, a sternotomy, experimental treatment, and cyberknife radiation. Mattie was my life's greatest teacher, and he showed us that CHILDHOOD CANCER IS NOT JUST ABOUT THE MEDICINE.
Within three months of starting treatment, Mattie was diagnosed with clinical depression, anxiety, and medical traumatic stress. Issues he did NOT have before receiving chemotherapy. Mattie was prescribed psychotropic medications, but very little research had been done on the interactions of these meds with chemotherapy on children. So in essence each day of Mattie's cancer journey was traumatic, in which we were constantly making life and death decisions and in the process we faced grief and loss daily. All this sadness and trauma does go somewhere! It builds up in our minds and bodies.
Those of us who lost a child to cancer, may look physically "normal" to the world, but that is just our façade. Instead, we have an internal fight each day to get up, to try to carry on our child's legacy, and to try to maintain our own physical health (which is ironically compromised from the incredible stresses and forever loss that we continually face), and to find the hope, love, and support needed to navigate life without our child.
I will never forget the day Mattie's cancer diagnosis turned terminal (August 5, 2009). On that day, Mattie and I went to the hospital rose garden and he jumped into my lap and wanted to hear about the day he was born. A story Mattie loved hearing me tell, and usually wanted to hear it during challenging times. I always share my "Dearest Mattie" story on Facebook (found below) on this day. This was a story I wrote and had on display during Mattie's celebration of life.
Mattie is forever missed, he has left a hole in our hearts and spirit. We are passionate about keeping his legacy alive at Mattie Miracle and taking the lessons learned from him to help other children facing their own cancer journey.
Ooga Booga (in Mattie-ese, that means I love you!)
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My Dearest Mattie,
It is said that parents love their children right from the moment they are born. However, in your case, our love for you began as soon as we learned we were going to have a baby. In fact, right after seeing your sonogram picture, we felt like proud parents. We posted those pictures everywhere. We shared these pictures with practically anyone who would listen or showed interest, and each September when I taught prenatal development in my undergraduate human development class, out would come your sonogram pictures to illustrate my points. Even my students got a sneak peek at our baby, a baby who would have a profound and meaningful impact on not just his parents but also every community he touched. Daddy and I did not only love you, we FELL IN LOVE with you, and that love grew stronger with each day. Your energy, spirit, love for life, intellectual challenges, sense of humor, and loyalty to your friends and family were only some of the wonderful traits we always admired in you.
This video is a tribute to you and your wonderful, yet short life. It seems fitting as we celebrate you, and say good-bye to your physical presence that I share the story about how you entered the world. The story of your birth had to be one of your most favorite stories to hear, and I found during times when you were reflective, overly tired, or in need of hugs and tenderness, the request for this story arose. In fact, I remember on August 5th, the day we found out that your cancer metastasized everywhere, you and I were sitting in the hospital’s rose garden, and you requested the story. It was almost as if you knew this was going to be a bad day, so in essence we might as well brace ourselves, cuddle, and prepare for this together.
Here is the story I always shared with you. A story Daddy and I will never forget. On April 2, 2002, at 11pm, I decided to head to bed. I was anxiously awaiting your birth, and as your due date approached, I couldn’t help but wonder, when will “the baby” be coming? I was restless and uncomfortable, so while in bed, I began to watch television. I was having trouble concentrating on what I was hearing, mainly because you were kicking up a storm inside of me. At which point, the kicking became so intense, that I literally felt something pop. You clearly wanted OUT, and you were going to kick your way into the world on your terms. Naturally after feeling this pop, I looked down at my tummy, and when I jumped out of bed, I realized my water had broken. This only happens to 25% of moms, and in retrospect, I should have guessed that this was just the beginning of how different our lives were going to be together. I immediately called the doctor and told her what happened. She asked if I was in pain, which I wasn’t, and she instead told me to get a good night’s rest, because my baby was going to be born the following day. Well I can assure you after hearing this news, sleeping was the farthest thing from our minds.
So on April 3, 2002, Daddy and I headed to the hospital and we were admitted to the maternity unit at 8am. The labor process began, but it was a VERY slow process for me, and at times as you moved inside my tummy, Daddy could see your head pushing against my backbone. Needless to say Dr. Mike, the anesthesiologist, became my favorite doctor that day. The hours kept rolling by, and still there was NO sign of our baby! I was getting weaker, I developed an 102 fever, and by 11pm I really had no energy to give birth to you. In addition, to how I was feeling, your oxygen supply was getting cut off, and your chin was positioned in such a way that would make the birthing process almost impossible. So it was at that point that the doctor recommended an emergency c-section. Things began to happen very quickly around me. I was signing paperwork for surgery and Daddy was being transformed by putting on a bunny suit so he could enter the operating room.
I had never been in an operating room before in my life, but I really wasn’t concerned at that point about myself. I was solely focused upon you. I was wide-awake for the c-section, but unable to see the process, which as you know, was probably a good thing. Daddy on the other hand found the whole thing very exciting, and began to videotape and take pictures of the surgery. Literally a team of people surrounded me and I will never forget Dr. Mike, the anesthesiologist who sat by my side, and talked with me and did whatever he could to keep me pain free.
When you have a c-section, your arms are strapped to the operating table, so I couldn’t move, and directly over my head was what appeared to be a rope with a clamp that was holding open my abdominal cavity. Normally by this point I would have passed out, but when it came to you, I developed strength I never knew I had. As the doctor began cutting, and finally got to you, the first thing she said was, “what is this?” That is NOT what you typically hope to hear when having a c-section. The doctor let me know that I had a grapefruit sized tumor on my bladder, and my immediate thought was, did this affect the baby? The next thing I knew, I felt her tugging, and I heard the loudest cry ever. Now here is the part of the story that I know was always your FAVORITE! I would always try to replicate the sound I heard coming from you that day, a sound that will always remain in a parent’s ear. It was a very large WAAHHH! WAAHHH! At which point the doctor told us two things: first, that you were one of the most beautiful babies she had ever seen, and second, that you had quite a set of lungs on you! I concurred with both statements.
The doctor then brought you over to me, and she felt that I needed to be the first person to touch you. So despite my arms strapped to the table, my right hand miraculously reached out and grabbed your tiny, soft, and cute foot. It was a moment I will always cherish, a moment in which I will never forget, and a moment I am so happy you too enjoyed hearing about. Each time I retold the story I felt as if it further bonded us together, and I always enjoyed hearing your comments, thoughts, and reactions to your story.
Seeing you made Daddy very happy! Though he was worried about me, since after the c-section, I had to have bladder surgery to remove the tumor, we both agreed that Daddy should stay with you and accompany you to the nursery. It is there that Daddy got to see you cleaned up, he learned that you weighed 6 pounds and 13 ounces, and that you had high Apgar scores of 8 and 9. Within an instant, Daddy became one of your fiercest protectors, and he cared for you for five days straight while we were in the hospital together. In fact, Daddy is the first person who changed your diaper, and though those were five very challenging days in the hospital, they were days that helped us form our strong family ties. Ties that were imperative and that we relied on for seven years of your life!
Your presence is so greatly missed. Nothing seems the same, is the same, looks, feels, or tastes the same without you in our lives. May you always know that Mommy and Daddy love you, cherish you, and that feeling will remain with us forever and always. Good-bye my Mooshi Moo angel and goodbye Daddy’s best buddy. With love from Una Moon and Daddy!
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