Tonight's picture was taken in April of 2008. This was three months before Mattie was diagnosed with cancer. In this particular picture, you can see that it was morning and Mattie had just woke up. He was in his pajamas and had been rubbing his eyes. Despite feeling groggy, he went right to his favorite item, Legos, and started playing. Naturally all helicopters need to fly in outdoor spaces, so he opened the door, and went outside on our deck. The one consistent item in his life was always Legos. Whether he was healthy or sick, he simply loved them! Once cancer struck Mattie's world, Legos became more than just a toy, they became a therapeutic tool. A tool that stimulated his mind, energized and motivated him to use his hands and arms (which was miraculous post-limb salvaging surgeries), and most importantly it was a tool that brought us together as a family while he was sick. We spent many days and months in the hospital, and Legos served as a mental diversion for all of us, and in the process, we could talk and connect as a family. Not as a family battling cancer, but simply a FAMILY.
Quote of the day: The dead don't die. They look on and help. ~ D.H. Lawrence
I woke up this morning with a lovely e-mail from a colleague. She wanted me to know about a little girl who was born in Italy in 1930. This little girl's name was Antoniette Meo. The fascinating part about Antonietta was she died when she was six years old from Osteosarcoma. In fact, this young girl lived an extraordinary life in six short years, which is why the Catholic church may make her a saint. The story that Jean shared with me today was so intriguing that I decided to Google Antonietta. I included some information about her below if you want to read more. Antonietta once said, "I am very happy that Jesus gave me this problem (meaning Osteosarcoma) so that I may be his dearest one." That seems like a very profound statement from such a young child, but a child who clearly had a special calling and understanding about her own life. I included her picture because it was startling. It was startling because her eyes and Mattie's eyes were VERY similar.
Antonietta was raised in an upper middle class household in Rome as the younger daughter of Michele and Maria Meo. She was nicknamed "Nennolina." She attended Catholic schools and stood out as an active, charismatic little girl who led her playmates in all their games, even after she became ill, and was popular with them because of her kindness. Her teachers said she was a child like other children, but stood out because of her personal charm and her sense of humor and the joyousness of her personality.
She was diagnosed with osteosarcoma, an aggressive form of bone cancer, at the age of five after she fell and injured her knee and the injury didn't heal. When her leg had to be amputated, she bore the ordeal "cheerfully." She was fitted with a heavy, artificial leg so she could keep playing with other youngsters. Catholic theologians have called her a "mystic" because the six-year-old wrote "extraordinary" letters to Jesus Christ in the last months of her life that displayed understanding and actions beyond the normal for a child of her age. "Dear baby Jesus, you are holy, you are good," she wrote in one of the letters. "Help me, grant me your grace and give me back my leg. If you don't want to, then may your will be done."
At first she dictated letters to her mother; later she wrote poems and letters herself and left each at the foot of her crucifix. In another letter she wrote: "Dear Jesus, I love you very much. I want to abandon myself in your hands. I want to abandon myself in your arms. Do with me what you want. Help me with your grace. You help me, since without your grace, I am nothing." She wrote or dictated more than 100 letters to Jesus or to the Virgin Mary, describing "holy visions" in many of them. After Mass, people sometimes saw her approach the tabernacle and say, "Jesus, come and play with me!"
Antonietta Meo at her first communion in December 1936.The child viewed the loss of her leg as a sacrifice to Jesus for the conversion of sinners. "I am very happy that Jesus gave me this problem so that I may be his dearest one," she told her father, Michele, after her leg was amputated. "Pain is like fabric, the stronger it is, the more it's worth," she told her father. She told her spiritual guide: "For an instant I lie down on my wound, so as to offer more pain to Jesus," and told her mother: "When you feel pain, you have to keep quiet and offer it to Jesus for a sinner. Jesus suffered so much for us, but He hadn't committed any sin: He was God. How could we complain, we who are sinners and always offend him?" She was eager to receive the sacraments of the Catholic Church and was baptized, made her first confession, was confirmed and made her first communion before her death. She also received extreme unction, the last rites, in June 1937.
She insisted on writing a last letter to Jesus a few days before her death, even though it was interrupted when she had to vomit. In it, she asked Jesus to take care of everyone she loved, and asked for strength to bear her pain. She finished the letter with the words "Your little girl sends you a lot of kisses." She told her mother when it was time for her to die. "In a few hours, I will die, but I will not suffer anymore, and you shouldn't cry. I should have lived a few days longer, but Saint Theresa of the Child Jesus said, "it's enough!" After the child's death, her mother had a vision of Antonietta in a glorified state that reassured her that the child was now in heaven.
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Peter and I have been dialoguing for some time now about reaching out to the Lego company. Lego has been a crucial part of our lives since Mattie's birth, and from 2008 to 2009, we owned every Lego kit on the market. When Mattie was battling cancer, Legos became our safe haven. We would Lego together as a family during chemotherapy treatments, at all hours of the day and night, and under good circumstances and often times under very difficult and trying times. In many cases, when undergoing chemotherapy and the recovery from the treatment, Mattie's immune system became severely compromised. Therefore he spent a good amount of time in isolation from others and germs. Isolation for a six year old can be devastating without something mentally and emotionally engaging. When Mattie was building with Legos he felt "normal," and it helped him to connect and talk with his nurses. Since his nurses would walk into his room, and always asked him questions about the structure he was building. When Mattie was sick, talking to him was problematic. He did not want to hear ANY noise, and conversation made him upset. However, Legos helped to draw him out, to engage him, and to work collaboratively with others. Frankly, I have no idea how we would have survived 15 agonizing months without such a therapeutic tool.
Mattie spent most of his treatment time in the hospital, but there were periods of time when we were released for a week at a time to be at home. Mattie looked forward to leaving the hospital only because that meant he could take a car ride to the Lego store at the Tyson's Corner Mall, VA. Mattie was a familiar visitor to the store, and the employees at the store got to know him. Mattie stood out since there weren't many six year olds in a wheelchair with a bald head, connected to all sorts of pumps, strolling through the store.
Tonight, Peter and I reconnected with Liz, the Assistant Manager at the Tyson's Corner Mall store. I say reconnect, because in August of 2009, we had the opportunity to meet Liz. This store held a special workshop for Mattie and his buddy Abigail (Ann's daughter). After store hours, the store invited Mattie and Abbie in to build anything Mattie wanted to create. There were two special Lego builders on hand to help them, and that night in many ways was magical for Mattie. I think perhaps it was for Abbie as well, since on the car ride home, she called us to say that was the "best night of her life." Needless to say Mattie was beaming to hear this. Linda (Mattie's childlife specialist at the Hospital) arranged this evening for Mattie with Liz's help. Unfortunately Mattie did not live long enough to have a wish granted through the Make-A-Wish Foundation, but in so many ways, this was a special wish that was granted through Lego. One neither Peter or I will ever forget.
We have reached out to Liz tonight by phone. Liz remembered us and Mattie quite well. In fact, Liz read Mattie's blog and was VERY familiar with all the wonderful structures he created in a year's time. Liz is working to help connect us with local Lego groups, groups that would be willing to run creative activities and events at our upcoming Pediatric Cancer Awareness walk on May 22, 2011. Liz is also going to approach Lego corporate for support of our cause. As I mentioned in the call tonight, I would love to partner with Lego and start a therapeutic program for pediatic patients. I realize the complexities of such a program, but after spending over a year living in a hospital, there is no other toy that came through the Hospital doors that was as engaging, intellectually stimulating, or creative as Legos. In addition, I also look at this toy/tool as having major psychosocial consequences. Building with Legos encourages teamwork, communication, and a discussion of issues. It is the perfect play therapy tool, and with children, toys have huge therapeutic value. In fact, the mode of therapy for children is PLAY, not talk therapy. I am not sure how to get this idea off the ground, but it is definitely something I am very passionate about.
Below are some slides Peter created to share with Liz. Some of you may recall the wonderful Lego creations featured here. The first slide was a structure Mattie created for Linda (Mattie's Childlife Specialist). Linda asked Mattie to envision what a hospital room should look like. He took it upon himself to illustrate his vision in Legos. Mattie's hospital had a private outdoor space for children with cancer. This space had a fountain, birds, a treehouse, and a swing. The actual room, was thoughtful. It had a desk in it for my computer (he was always thinking about me!) and a huge shower. He heard me complain enough about sharing showers, that he thought his ideal room would have a shower that we did not have to share with the family next door to us.
The second slide showed Mattie's Lego alligator. One weekend, while in the Hospital Mattie sent Peter to the Lego store for ONLY green legos. He had it in his mind that he wanted to build an alligator from scratch. As you can see he was very successful. However, as you can see from the other pictures, Mattie built many, many things over the course of his treatment.
The third slide shows Mattie's love for vehicles. Vehicles of ALL kinds, as well as things that moved. As you can see Mattie built Lego cars, planes, trains, and a carousel! Also notice that Mattie and Peter built the Taj Malhal, which contains 5922 Lego pieces. This structure and many other Mattie creations are all over our home. Completely intact, just how Mattie left them.
The final slide was taken in August of 2009, at the Lego Store in the Tyson's Corner Mall. We had learned that Mattie's cancer was terminal in July, and Linda helped to arrange this special night for Mattie. That night Mattie chose to build a New York City taxi. He had seem several of them, and even rode in them while he was being treated at Sloan Kettering in New York. In the pictures, you will see Mattie with Abbie, along with two expert Lego builders, Jared and Brandon!
1 comment:
Wow, Vicki,you are right! Antonietta's eyes do look remarkably like Mattie's...and yours! Made me shiver when I saw and read her story, interspersed with Mattie's, and wonder again about the plausibility of reincarnation.
These weeks have been rough ones for me with the current reality seeming way too "real". I have been reading a fascinating book called "The Emperor of All Maladies" by Siddhartha Mukherjee, A biography of Cancer. Reading it makes me see, all too well, that we have still have far to go in finding a definitive treatment for this insidious disease, and I have been amazed at reading at times what seemed to be ancient history, but was actually occurring when I was a child! It has just been so recently that any sort of effective treatment at all has been available. Anyway, it is worth reading if you haven't already read it.
In this osteo world that I still dwell in, two of the people that I met and knew personally from Md Anderson days in Houston,- a young guy diagnosed as a teenager, who has been fighting for four years, and is his mother's only child, and a young man(one of the rare adults diagnosed in his early 20s) married to a lovely young lady, who has been fighting the monster for 6 years, have both been told by the doctors they have only days left, and it doesn't look like either family will be able to celebrate Christmas with their loved ones this year...so sad.
We need a more effective treatment..we need a cure...I feel so utterly helpless in the face of so much tragedy. Trying to find some good to hang on to, but hard to do. I am sure you know that feeling.
Karen, Mother of Keaton for Always
www.caringbridge.org/visit/keatonlee
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