Saturday, May 10, 2014

CdLS Awareness Day

Today was CdLS Awareness Day. And as I look around on Facebook and enjoy all the photos of people in their awareness shirts or decked out in purple (the official color of CdLS) I can't help but think about how far we've come since we first heard about this day.

Back then I wanted nothing to do with CdLS. Today I clearly see the blessings it has brought to our life.

Back then I didn't want to hear any more about it. Today I write a blog and willingly tell the world about our Ella.

Back then I just wanted it to go away. Today I listen to the giggles of a little girl jumping on the couch and can't think of a better sound.

Back then I couldn't talk to a soul about CdLS or Ella without bursting into tears.

This year couldn't be any different.

In the last week our family has been featured in 2 local newspapers for Ella's Run, the fundraiser we're doing to raise money to go to Conference.

And good grief you guys.. Tomorrow morning a news crew is coming to our house to film a story about us, and on Wednesday we're going LIVE on another station to promote Ella's Run. I know we live in a pretty rural area and it's not like they're flying us to the TODAY show or anything (yet) but still.. This raises some pretty big issues around here. Like 1. Does this mean I should take down the final remaining Christmas decoration on our wall? 2. Should I attempt to finish our half painted living room tonight? and 3. Is it possible to lose 10 pounds before the morning??

In all seriousness though, we have come so far on this journey and are so excited to be raising awareness about CdLS. Being honest about it has opened so many doors and introduced us to so many people we wouldn't otherwise have known. We have been shown love and acceptance and generosity beyond measure. I can't imagine what life would be like if we had stayed alone and scared and unwilling to open up to others. This year I can honestly say I am thankful for CdLS is our lives.

Happy CdLS Awareness Day to all our cuties out there!!

Oh yeah.. I may or may not be posting a link to our video, depending on how big of a fool I make out of myself. (-:

1 comment:

  1. So happy you all are getting the word out about this rare, strange, enlightening disorder. I have learned to embrace this weird and yet magical life we have been thrown into. There is a specialness that people are drawn to. I have numerous people that say they need their "Ally fix". A sweetness, a connection to even completestrangers. Although it hasn't all been a blessing or wanted and often feared, she has brought more joy into our lives than we could have ever imagined. I am enjoying reading you blog and feeling that we are not alone. Thank you for sharing the good, the bad and the ugly with us.