Tuesday, June 16, 2015

Ella's Run & CdLS Awareness Day

I had a blog reader email me and ask the other day, "So.. how did Ella's Run go?" I was a little confused because I thought, "Why don't you just read the blog about it?" And then I realized..

I never wrote a blog about it

Oh, right.. In fact my last blog was way back in April. Oops.. Worst. Blog. Writer. Ever. 

Do you think this has any correlation with May being right in the throes of my 3rd trimester with baby #5 and also the beginning of summer break for my other kids? Quite possibly yes, absolutely YES. After the little blessings finally go to sleep at night basically the only thing I have enough energy for is sitting down on the couch and staring at the wall for awhile. Really. (The only reason I'm writing this right now is because I woke up at 4:45 with the baby pressing against my bladder and haven't been able to go back to sleep again.. Naps for all today!!) I read a blog on pregnancy the other day that said something about when the mere thought of movement causes you exhaustion. Yes, that is 100% where I'm at. 

So anyways.. CdLS Awareness Day.. Ella's Run. Right.

I know I said it last year, but I just can't emphasize enough how much different CdLS Awareness Day is to me now than it was when Ella was first diagnosed. That first year I wanted nothing to do with raising awareness for CdLS. I didn't want to talk about it, think about it, goodness gracious definitely not tell anyone my child had it. Now? I actually really love spreading awareness. I love knowing we could be helping someone find a diagnosis, letting someone know they're not alone, giving someone hope who feels hopeless. It still blows my mind that I would willingly go on live TV to talk about my daughter having a rare genetic syndrome.

I say this again because I know there are mamas (and daddies.. and grandparents) out there just getting this diagnosis, struggling to deal with all the questions and whys and what if's and doctors and therapists and it can all just be SO overwhelming at first and you might be tempted to look at our family and think "It must be so easy for them to raise awareness. They must have accepted this diagnosis so easily. Why am I having such a hard time?" I want to tell you that it hasn't been easy and it's okay to have a hard time or not want anything to do with CdLS right now. There is hope and there is a future and who knows? You might just find yourself on live TV in a few years talking about that thing you never wanted to even think about, assembling 'swag bags' for 5K fundraisers and even writing a blog over a whole month later about it.. ;) It might be easy to assume that I have the type of personality that enjoys taking charge and planning things and talking to strangers.. which, if you know me really couldn't be farther from the truth in my opinion. Just one of the many ways Ella has changed me and brought out desires in my heart I didn't even know were there to start with.

The actual run, which was held on CdLS Awareness Day, went so so good! We are SO THANKFUL to everyone who came out and helped us raise awareness for CdLS and support our Ella. I really can't even begin to describe how much it means to our family to have that kind of support. The weather was a little chilly for our fair weather girl, but she enjoyed snuggling up in Papa's coat the entire morning.

Ummm... yeah.. so totally forgot to take a picture of the starting line so here's a picture of everyone's backsides.
You're welcome.
We had a great turnout and raised our goal amount of money to donate to the CdLS Foundation and also put some away toward bringing Ella to future Conferences. We are so thankful to all the businesses that sponsored our tshirts or donated supplies. 
Ella with some of her therapists
One of my LEAST favorite parts of fundraising (okay, actually the part I absolutely despise with a passion) is calling people asking for donations, but at the same time it is probably the area where I feel the most blessed. I love when businesses owners answer the phone and hear what we're doing and without hesitation volunteer to help out. I love spreading awareness to people who might have never heard of CdLS otherwise. I love giving them our CdLS bookmarks and seeing them look at the picture of the kiddos on there and saying "Oh how cute!" I'm still working on getting all the thank you's out--I'm trying to hand deliver as many as possible, which of course requires such sacrificial acts from me such as taking the kids to Jitters (the donut shop who donated to the run) to drop off the thank you and of course stopping to eat some donuts as well. Of course. This all takes time, you know. Sidenote: If anyone in the area has not had a Jitters donut, you need to go ahead and do that like now. DE-LISH. 

So again, I can't say it enough---THANK YOU THANK YOU
everyone who helped make our 2nd Annual Ella's Run a success. 
We are so grateful to each one of you!

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