Saturday, January 21, 2012

Emily

(I will be keeping this post up longer than my normal 24 hour period because Emily deserves at least that.  And probably a pony, too).

I am not truly dazzled by much.  Perhaps I am a bit jaded, but it takes something really special to impress me.  I never could understand Blue Man Group.

Yet since April 2011, I have been dazzled repeatedly.  In following the amazing struggle, grace, and determination of a family fighting childhood cancer, I have found myself humbled. Ed and Nadia Beazley are friends of ours who continue to battle obstacles that would bring most of us to our knees. Their story needs to be told.

The first time I met Ed and Nadia, it was the first weekend after September 11, 2001. It was their wedding.  Attendees were still in shell shock over the national tragedy, and I felt horrible for the young couple starting a life together on such a somber note.

While many couples might have ignored the giant elephant in the room, Ed and Nadia recognized the deep wounds of those in attendance. They chose to embrace a mood of patriotism and togetherness. Bagpipers marched in playing not their usual wedding selections, but instead played several patriotic songs that inspired many to stand or sing along.  I will always remember that moment as the start of my own healing process after 9/11. Ed and Nadia, as it would turn out, seemed to have a special knack for mending the wounded.

When Nadia became pregnant a few months later with her first daughter, Emily, she was thrilled. I remember bumping into her and she revealed her due date. It was September 11. She must have read my look of oh no and told me confidently,"It's not like anyone ever has their baby on their exact due date, right?"

Of course, our beautiful Emily was born on September 11.

Little Emily faced a very tough first year with a host of health issues that threatened her life and included the likelihood of profound developmental delays. She was born with PPHN (persistent pulmonary hypertension) and she required an ECMO (heart and lung) bypass when she was only 4 days old.

Ed and Nadia again channeled their inner healers and saw her through a seemingly hopeless situation.  Emily wound up attending the same preschool as Daniel, and I marveled at her amazing strides and ability to exceed all medical expectations. She's got a razor sharp mind and marvelous sense of humor. Ed and Nadia had again met tragedy head-on and won.

Yet when my husband got the phone call from a mutual friend telling us that Emily had been admitted to the hospital this past April and that things looked extremely grim, my heart sank. Not again. The family had been through so much, and now cancer? The diagnosis was Stage III T-Cell Lymphoblastic Non-Hodgkin's Lymphoma. Such big words. Such a little girl.

I went to that horrible worst-case scenario place and prepared myself for the unspeakable. Stupid me. This was Ed and Nadia. This was Emily. 

I followed the medical ups and downs through Facebook and CaringBridge. I spoke with mutual friends. It seemed like every step forward also included two steps back. While still aggressively fighting Emily's cancer, Ed and Nadia advocated tirelessly to bring attention to childhood cancers. I had no idea that pediatric cancer is one of the most under-funded research areas out there, despite it killing more children than genetic anomalies, cystic fibrosis, and AIDS combined

Emily returned to school this past week, and for a girl who has had so much struggle in her life, her biggest wish is to just feel normal. So with the help of friends, she put together a video to re-introduce herself to her classmates, detail her journey, and let them all know that she is ready for anything.

Please have a look:




When I asked Nadia if I could share her family's remarkable journey, she told me that they are simply following Emily's cue.

If you are interested in learning more about pediatric cancer research, or supporting CureSearch please visit: http://www.curesearch.org/.

Thank you, Beazley Family for all you do to inspire those around you.  And happy first week back at school, Emily!  We can talk about your future chess lessons another day.  Maybe Monday.

To read more on Emily, click here.

7 comments:

  1. There's a lot of words roaming around in my head, yet I still can't find the ones adequate enough to express how this post makes me feel.

    Suffice to say, what a beautiful and brave girl and what wonderful and courageous parents, for it takes a good soul and a strong heart to be the loving supportive parents that they so obviously are.

    My thoughts go with them

    Thanks for sharing this post Marianne.

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  2. Truly, well written.

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  3. You name it, I've pretty much seen it...still, this touching story brought a tear or two to my eye...
    God Bless Emily and all children suffering from this dreadful disease.

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  4. This is an amazing story of courage and triumph. Thank you for sharing it. I get so bogged down in the minutiae of living that I so appreciate stories like this to snap it back into perspective.

    Hearts and thoughts and prayers for your friends - both for healing and of thanksgiving that there are such strong survivors in this world.

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  5. What a sweet little girl! I hope she has a great time at school!! What a great idea to make this video to show her class!! Thanks for writing this. Good luck Emily!!!

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  6. Lily - Thank you for your kind thoughts. The kid is the real deal and the parents really are the creme de la creme. I think I would have crawled up into a ball and evaporated under such circumstances. Such strength.

    Anonymous - thank you.

    Maplewood - I am so glad I don't see what police officers see regularly. I would have to be institutionalized. Thak you for all you do, too!

    S. Stauss - Thank you - I often forget how lucky I am and stories like this make me hug my kids tighter.

    Mary - the first time I saw the video (Emily wrote all the captions herself), I was so inspired. I also went through a box of Kleenex. It needed to be shared.

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  7. First of all I love your blog. Thank you so much for bringing stories of Emily and Nate to me and help me to remin myself never sweat the small stuff. God bless you and your family.

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