Why I fight....
Rylan was 2 weeks old and we had just returned from her 1st well baby visit. Kohen was napping and Ry was all snuggled up on my lap eating when my phone rang. I looked down and saw it was the pediatrician's office. I remember thinking how strange it was, since we had literally just left there a couple hours earlier. When I answered, I heard my pediatrician's hesitant voice and instantly knew something was wrong.
The little bits and pieces of that conversation that I remember will always haunt me. I remember my face getting hot and my voice getting loud and foreign sounding. I kept asking what exactly he meant by cystic fibrosis. Was it intellect? Was it motor skills? I kept insisting he call my husband. Barry would know how to process all of this. I clearly wasn't hearing him correctly. I kept looking down at my daughter's beautiful chubby little face and thinking to myself they're wrong, there is nothing wrong with my baby.
A week after learning Rylan had CF, I showed up on the doorstep of our local CFF office, baby carrier in hand, and offered my help. I literally rolled up my sleeves and jumped in with both feet. Over the next few weeks and months, I went from someone who had maybe heard of CF a couple of times to someone who could recite what a gram negative bacteria was and how they affected my daughter's lungs. I could (and would) talk to anyone about cystic fibrosis who had 30 seconds to listen. Heaven help anyone who happened to jump on an elevator with me and comment on how cute my baby was. "She is cute, isn't she? You would never know there is a battle being waged inside her lungs. Do you know what CF is?"
I honestly wish I was kidding.
Looking back, I now know this was my way of coping. It was my way of dealing with the stress of the unknown. Some people give themselves time to digest this info. I didn't. At the time, I couldn't. I couldn't slow down long enough to really think. I was too scared that if I did stop, I wouldn't ever be able to get going again. There is so much of her 1st year of life that is a complete blur to me. I poured so much of myself into learning about CF and advocating for her, I forgot about everything else.
Fast forward to today. I now know that Rylan is no different from anyone else. I now know that she can run and skip and jump and yell and sass back and do everything any other 3 year can do. I know that she can go to school, and dance, and gymnastics, and still manage to do 60-120 minutes of therapy every day. She can smile and love and hug and kiss and bring joy to everyone that she touches. She just happens to have cystic fibrosis. Just like she happens to have beautiful blue eyes and curly hair. Most of the time, CF is just an afterthought. And it's definitely not the 1st thing I tell people when they meet her.
So, why do I fight? I fight so Rylan can continue running and skipping and jumping and yelling and sassing back. I fight so she can continue going to dance and gymnastics and one day use those skills on the dance floor at her senior prom. I fight so she may one day be blessed with her own little blue eyed bundle of joy to love and hug and kiss. I fight so we can all forget what that dumb little number is that some refer to as "the median life expectancy of a CF'er".
I urge you to take a few minutes and watch this amazing video put together by Emily's family...
And after viewing, I hope you feel compelled to participate in this challenge. No one is merely asking for a donation....we're asking you to share. Whether you blog or Tweet or Facebook, share this video and it's message anywhere you can. By sharing, you're advocating. And by advocating, you're helping Rylan and Emily and Piper and Jenny and Stacey and Josh and all the other beautiful souls out there singing, jumping, dancing, and sassing their way through CF.
Official rules:
1.) View Emily's video, and then consider making a donation of your own or 'liking' her FB page (neither is required, but both are encouraged!).
2.) Create your own blog post, FB status update, or other form of social networking tool (letter, email, whatever). In the body of the message, place a small paragraph of why YOU fight for a cure for cystic fibrosis and why this cause matters to YOU. This can be your CF story, your wish for the holidays, your version of community--whatever.
3.) Link to Emily's Entourage Website and encourage your own readers to take up the challenge.
4.) Comment over on Piper's blog post with a link to your blog....leave her a message about how you shared this vision for an automatic entry into a drawing for a very special CF/transplant-awareness prize package, including gifts from iheartguts.com, apparel, and other fun goodies!
5.) Re-post these rules on your own page.
Check out www.opt2thrive.com
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