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 status...it 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.