Tonight's picture was taken in November of 2002. Mattie was seven months old and desperate to walk. He did not like crawling and forget about sitting on the floor. Mattie wanted to move around on his feet and always found a way to convey this need to me. My college mentor at Union College sent me a school sweatshirt for Mattie when he heard about his birth. Union College was where Peter and I both received our undergraduate degrees and where we met each other. Naturally when I received this sweatshirt from my favorite biology professor, part of me wondered whether Mattie would go to Union College when he got older. Who could have possibly known in 2002, that Mattie wouldn't even make it through elementary school.
I am sharing a story that Ann passed along to me today from a member of Team Mattie. This story was apparently posted on a website of another child battling cancer. I have mixed feelings about this story which I will share below. But if it gives other parents who read this blog comfort or helps them understand why their child was chosen to have cancer, then I consider this story worth posting.
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The Brave Little Soul by John Alessi
Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."
Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you." God and the brave soul shared a smile, and then embraced.
In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those who were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.
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Certainly the story of the Brave Little Soul is poignant and speaks right to the heart of a parent who has lost a child to cancer. One thing is universally true about parents whose children have died, we ALL look for reasons and explanations for death. We may turn to different things for such explanations, but as logical and reasoning beings we like to understand cause and effect. Though I suspect the mom who posted this story is in a different place than I am spiritually, I do respect the message she is trying to send. Which is that there MUST be a reason we gave birth to children who developed life threatening diseases and died! We need to see the purpose and meaning behind such a great sacrifice and of course there has to be a reason why our children had to suffer incredible pain, why we had to observe this, and why we have to live with the visions from this trauma.
Specifically in the story we hear that................. "suffering unlocks the love in people's hearts. Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer." I think that observing the suffering of others can do one of two things, it can either harden the hearts of observers because they are constantly bombarded with images and sounds of suffering (such as through access to news and graphic pictures of suffering 24 hours a day, 7 days of week) or it can be a positive life altering experience if you let it.
When Mattie was diagnosed with cancer, I distinctly recall the feeling of shock, which lasted for many weeks. I was so stricken by the news I couldn't eat and I felt extremely anxious, with times where I couldn't catch my breath or worse I felt my heart fluttering. It was during that time that Ann, our Team Mattie coordinator, stepped in, and along with Alison, they developed an incredible support system for us. From July 2008 until now, I have observed how suffering can open the hearts and minds of others. I heard from parents over the last two years, many of whom told me how Mattie's story has changed their lives and their priorities. I very much value these stories, thoughts, and feelings shared with me from other people.
However, how do I feel about Mattie having to suffer in order "to create this miracle for the good of all humanity?" Or that Peter and I are "those souls who will help you (Mattie) create your miracle?" Well how I feel about both statements is NOT GOOD! I believe in teachable moments, life lessons, helping, listening, and processing thoughts and feelings for others. I can do this for hours, weeks, and even years, and have done this for many people over the course of my life. But sacrificing my only son for all of humanity is where I draw the line. Perhaps that is selfish, and perhaps this seems inappropriate to be questioning fate and/or God. But the way I look at this is at the end of the day, Mattie's death may have changed lives, but Peter and I are still paying the price and most likely always will for this "change in humanity." In Peter's own words, "every person should have a child like Mattie, then read this story, and see if it makes you feel better about your child's death? It simply doesn't!"
Peter was busy this morning stringing up more Christmas lights. These lights seem to set our living room a glow from our balcony, and I can't help but think of Mattie when I see these lights. We went out together today for a late lunch at Mattie's favorite restaurant. It was simply frigid out and as we passed the koi pond at the restaurant, we both said hello to all of Mattie's fish! Though this restaurant is not around the corner from where we live, we visit it because it reminds us of Mattie. I can recall sitting in EVERY room in this restaurant with Mattie and I can even give you certain details about the adventures we had at specific tables. Though it may have been Thanksgiving only two days ago, I LOVE eating turkey and was thrilled to have a second Thanksgiving lunch today! I do not like cold weather, but I love cold weather foods.
At lunch, there was a woman in her 80s, celebrating her birthday behind us. She had a lot of spunk and she was sitting with two younger women. They were all sharing stories about how long they were married, and hearing this caused Peter and I to pause and reflect on our marriage. Peter and I have known each other since college and I do think the fact that we were friends first, have many common interests and priorities, enables us to somehow find our way together through one of life's worst challenges to a marriage. We chatted about various things today, and we are relearning to converse with each other again. That may sound odd to my readers, but for those of you who are parents, I ask you, what do you primarily talk about when you are sitting with your spouse? I would imagine a good percentage of your conversations revolve around your children! What happens if your children no longer exist? The answer is, it is difficult, and in many ways you have to start over again with learning the art of conversation.
Later today, when I got home, I worked on Foundation things. Peter and I brainstormed some ideas in the last couple of days, and while I had these quiet moments, I decided to sit down and be productive. While working on the computer, Peter came upstairs with a vase with three roses in it for me. The roses came from our garden and despite the cold weather, our roses are doing beautifully. He did not have to say it, but I knew he brought me three roses, as a symbol of our family and the love we have for each other.
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