Saturday, August 15, 2009

Silly Lily

A friend sent us a care package all the way from England! Inside was a special poem just for Lily that I have to share..

There once was a girl called Lily...

Who's hair was all wild and Frilly...

Whether up in a 'fro,

Or a hawk of faux...

She ALWAYS looks Stylish, not Silly!

This very special lady and her husband came into my life a few months back. I was searching for answers, looking for statistics to calculate Lily's prognosis. Trying to make order out of the chaos that was my life. All the papers said this cancer was very rare and had a poor prognosis. I had been talking with my cousin who casually mentioned running across someone online who had Lily' tumor when she was little and also has LFS. I immediately asked her to pass along my info. I had yet to find an adult survivor of adrenalcortical carcinoma. I read the scientific papers, I joined the pediatric ACC group online. One paper mentioned 1 survivor at the ripe old age of 28. I Found a couple survivors in their teens which was a positive. All I really learned was that this was indeed rare and the prognosis was poor. I wanted to know what to expect. 'You can't always get what you want, but sometimes....'

This lady is amazing. We chatted by email, then instant messaged and finally had a "proper" conversation via skype. She is one of those people that as long as I live, and probably after- I will be glad our paths crossed. She is real, and inspirational and knowing her gives me hope. Her life has not been easy- she has faced cancer after cancer for 31 years of this uphill battle that we who have this mutation share. But she has hope and she loves life, embraces love and she has a spirit about her that is kindred to me. She reminded me that there is a person behind every statistic. And each of those people has a story.

So I have been wandering around wondering what now? Should we just float by day to day? Dare I make plans for the future? Should I start that book you all keep saying I need to write? Maybe I should clean my house? By aging 7 years in the past year, I have been thrown head long into a mid life crisis. By Connolly standards it's more of a 2/3 life crisis, but I digress. I realize that I'm hopelessly out of touch with friends and that facebook is a really crappy substitute for a phone call. I realize that last year my life came to a stand still and the world kept swirling around me. Now I have to catch back up. Part of me wants to know what the hurry is to catch up. I am here for a reason. Most days it's to play referee between my children. Some days I am tempted to let them fight to the finish and then I remember how hard we worked last year to keep them around. And so I intervene. Begrudgingly. Only to have to repeat it in 5 minutes. I look to my partner, my best friend, the love of my life- he has answers that keep the computers, tv, and phones running- but he can't get the children to behave either. We sink into the couch, ignoring the almost tribal yells erupting around us- gaze into each other's eyes and smile, and wallow in the normalcy we once craved. Basking in the every day nonsense that gives me the cause to ponder- what are you gonna do next?

I'm gonna go to Disney World. :)


  1. Ohh Jen and family,

    I'm so glad you found this wonderful soul who's lighting the way for you!

    We have gifts all around us,, let it be "going to Disneyland" or listening to our "howling monkey's" making mischief.

    Your are an inspiration for your strength and courage, even when there are times that you can bottom out. How can you not? Your four-some maybe a bunch of monkey's,, but you are only human.

    And your soul mate---carry's you thru those times,,, because life just keeps moving on. We can't help but to continue to grow in more way's than we choose,,,

    You my friend,,are beautiful.

    All my love,

  2. Can I go with you?



  3. Love that poem. And can't wait to hear about the Disney adventures!


Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)