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Sunday, October 28, 2012

Gratitude for Those Who Listen

This week? A life changer. I was blessed with hundreds of people shaking my hand, hugging me, and either wanting to know more about our son Thomas and our family,  or people eagerly sharing their own personal stories.  I had entered some world where corporate, sparkly-gown-and-suit-wearing, beautiful people at the Palace Hotel were crying. Masks off-- real people everywhere. My sister Pirrie was there all the way from Charlotte, just for the night, and she was treating me with immense love and support. People were sharing their own suffering. People were giving Lynn and me all kinds of encouragement. People were stepping out of their own lives and imagining my child's life, and the lives of so many other struggling children. They cared. Maybe I was in heaven for a moment.

Thursday night, as the San Francisco March of Dimes Mission family, my husband Lynn and I shared our personal story of Thomas's struggle with around 450 people at a live auction at the Palace Hotel in San Francisco.  We were on a stage with spotlights talking about a story that we often feel no one really has time to hear. It was ironic. I felt a mixture of immeasurable gratitude to God and to the quiet audience, and also embarrassment for taking everyone's time. I worried about boring people...or even scaring them!

And then reality hit me. I had a chance to TELL PEOPLE WHAT THIS IS LIKE. This was a blessing beyond what I dreamed of. What is it like? It is sad, it is hard, exhausting, and it is isolating. But not anymore... I'm telling our story! I'm telling what it feels like to watch my child suffer as an infant, through a complicated open heart surgery. Then suffer some more, due to a life threatening arrhythmia and multiple toxic drugs that he took for 9 months. Then to watch him develop into a beautiful, but complicated and very difficult boy (because of his suffering) who so far doesn't fit most everywhere...and so he still suffers. He is a boy whom most parents and adults observe from a long distance, with curiosity. I have watched my child become isolated, and I have become isolated along with him. I have cried so much for him.

But I haven't just watched...I'm a "doer" and so is my husband! Lynn and I have tried EVERYTHING to "fix" him...psychologists, neurologists, psychiatrists, occupational therapists, homeopaths, biofeedback specialists, "defeat autism now" doctors (even though he doesn't have autism), integrative medical professionals, behavioral pediatricians, social skills therapists and teachers, and now we are working with a neuropsychologist.

What did I want to tell people this week? First, that God, through this struggle, has taught me that we have so little control over life (that includes the life of our children)...because life belongs NOT to us (the parents), but life belongs to God. We can paint that picture of our child's life, of our lives, a thousand times, but God's picture will always look different. And in the end it will look much richer and it will bear more fruit, if we can trust. I have learned that I am not God. I am lost. I need to trust God. I'll continue to do my best to help my son, but the outcome is not up to me.

Second, I pray that we all challenge ourselves to notice the child (and family) who is doesn't fit... Who might be even unappealing to hang out with. That child who isn't easy to be friends with-- the mom who isn't so perfect. Listen to that child's story.  Reach out and include him or her, even if it involves a little work. You could change a life. You could change your life. These children will not heal without the love of their community. These parents won't survive either. And if our hearts don't go out to those who are suffering, our own growth will cease.

The part that I didn't get to share with everyone that night was what it felt like to be up there. I was so anxious before the event. I worried that my message wouldn't get out because of my tears. I worried that I would take too much time. I planned to pretend like I was talking to a friend...but when I stepped up onto the stage, I was overwhelmed with a feeling that I was talking to God. And the words weren't hard at all to find. The bright lights made me feel warm and encouraged me to connect. I felt surrounded my love. (I know it sounds corny, but I am not making this up!) It was nothing like that picture I had painted. It was SO much better and more beautiful. And after our story, as I stood on the stage watching the paddles raising while people donated hundreds, thousands of dollars (over $800k was raised that night)-- I felt like those paddles were the SIGNS that I had been waiting for for so long! I'm NOT on this journey alone. Thank you to all of those people who listened that night. Thank you God. And thank you to anyone who took the time to read this, and who has cared about a child who is not easy to care for.


1 comment :

Lynn Challenger said...

I want you to know that you are a special woman. Please keep writing.

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