Thursday, August 12, 2010

You can't go it alone

Technology is such a wonderful thing. Because of it, I am able to instantly connect online to hundreds of moms like myself who have a medically fragile/special needs child. I wonder how moms like us "back in the day" got by without having this luxury because I honestly don't know how I'd get along without it.

CdLS is a very rare syndrome so there are not a lot of families around to connect with physically. But I can jump on the computer and instantly be in touch with hundreds of other CdLS parents and I am so thankful for that. We share experiences, offer advice and lend support to each other. There are so many of us on Facebook I'm surprised we haven't shut down the site!

The information and words of encouragement I receive from my fellow CdLS'ers means so much to me. This past week has been exceptional in particular as we face one of the most important days in our lives with Ella Grace's sleep study to determine if the trach can be removed. The way everyone has rallied together for us has been remarkable. I logged on to Facebook the other day to find that just about everyone had posted our circumstance and prayer request as their was completely overwhelming. With tears in my eyes I scrolled through post after post after post with people who have never even heard our names before replying that they will be praying for Ella Grace and our family. Wow.

I know I am biased but CdLS moms in particular are truly amazing. Our children are so rare and complicated it really takes a lot to manage their care and I am so impressed with how in tune and smart and determined all of these women are. It's funny how we are so much alike...coincidence? I think not.

We were fortunate enough to get to meet a lot of these families face to face a few months ago at the national CdLS conference in Dallas and it was unreal how we all just "clicked". I loved them before I met them in person but now we are truly family. It's incredible how God brings people together; it's so obvious that it was no accident and I feel so blessed to be a part of this amazing group of people.

CdLS "Facebook" moms at the national conference


  1. Suzanne! LOVE this post! and everyone we know online and everyone we met in Dallas is our family! I remember reading a photo comment of some of us moms from the Conference that said we are 'soul sisters' is so true! I would be so lost without you all.. and I love our children like I birthed every single one of them ;) LOL!

    Still praying for EG as she gets her adnoids and the cyst they found taken out and TONS of prayers still as she gets her trach removed! and never forget that we're not alone... and your sould sisters are out here thinking of you and living what you live! ;)


  2. We'll meet you in chicago, okay? Glad you had a great day, and I hope the "details" that need to be ironed out for the trach removal go smoothly too!


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