Tuesday, March 1, 2016

RARE Disease Day: Leap Year 2016

February 29th is a day that only comes around once every 4 years. It's 'borrowed time', as commonly asserted.. a day to celebrate all things that are unique and rare. The Rare Disease Foundation uses this date as their day of recognition. After all, what could be so Rare as a child with an uncommon illness or disability? A day in June perhaps.. but even a gorgeous summer day can't compare with some of the beauty seen in the eyes of a child who has overcome life threatening illness and come out the other side still smiling. That beauty is what I've seen in S since the very first kicks inside my belly. She's always been a fighter, and her story encourages others as they encounter their own hurdles in life.

Leap Day is supposed to be a day where we appreciate the unique; the uncommon, but also a day of opportunity. Do you know where you were on Leap Days during your lifetime? I can't say for most of them.. but I know that on Leap Day 2012 I was 23 weeks pregnant with a precious little girl. I was terrified. I felt trapped, like I had no way out. Mere days away from the 'final deadline' I felt alone and scrutinized over a decision that I didn't know how to make. I still remember the words of my mother 'you have to do what you feel in your heart is right.. no matter what people will say or think'. 
That lesson has been one I've struggled with for my entire life. From the encounters in middle school where I was afraid to go to school with crutches.. or my anxiety about leaving them home on days I felt ok without them.. to decisions that I've made for my children, I've always worked hard on remembering who I am, what's important to me, what's best for me and the people around me, and letting that be enough. Nothing says that more than the twists and turns of the Baby S Story and the incredibly results that I've seen from Miss S herself. I love that girl; and she is my inspiration to keep pushing every day. 
Elisabeth and I have been hard at work over the last year, and we are thrilled to be able to put this book back up on the Amazon marketplace. We hope to expand the reach of this novel, and bring some of the ethical issues into the limelight that is needed to get people thinking about the value of human life, and the politics of surrogacy. Being on the other side now, I realize the need for these issues to be addressed, and the only way to do that is to start the conversation. I hope to be having a lot of conversations in the next year. So please, buy a copy for your mom, for your church group, for your local library. Share the link with the teachers and lawyers that you know and the single moms and special needs warriors alike. Together our voice can be heard. 

This year I spent Leap Day with two very sick little guys.. my 6 year old has a double ear infection and my 2 month old has RSV. It was far from a glamorous event to see.. bodily fluids and disarray everywhere. Regardless I was still sure to take my daily moment of thanks and thank every part of the universe that made this entire journey possible. S is a once in a lifetime child.. and I get to be her birthmother. I could not be more thankful. <3 span="">

1 comment:

  1. Hi Crystal,

    My name is Noelle, I am a producer at the Dr. Oz Show in New York .. I came across your article in people magazine and we would love to feature this topic and you on our show. I would love to speak with you more in detail about this . Please call me as soon as you can, just because this is time sensitive . Thank you so much !! I am looking forward to speaking with you.



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