“It’s so Austin…” – Shelly
“It’s so Austin…” I heard that sentence a lot the weekend of July 27-29. I inferred it to mean several different things- odd, wacky, unique. The hotel elevator has to use your room key to unlock the button so you can go up a floor, and it had no rhyme or reason if it was going to go up or down… It’s so Austin! The doughnut shop around the corner, Voodoo Doughnuts (brought to all of our attention by Mac Cafferty), where you can buy a cereal topped doughnut or one shaped like a voodoo doll… It’s so Austin! The local zoo that only houses rescue animals and its very offbeat and rustic landscape… It’s so Austin! So it seemed fitting that our odd, wacky, and unique CCDS Family was all congregated together in this town known for the odd, wacky, and unique. This is how our “family reunion” of sorts went down for the Alveys.
First off, I need to mention how incredibly blessed we were by the Thisbe and Noah Scott Foundation to fund our travel expenses to the conference so we could meet everyone and learn about our children’s conditions. Lindsay and I have emailed several times and she is literally one of the sweetest people! I don’t know how I missed her at the conference but I am very sad to not get the chance to say thank you to her face! If you need an organization (besides our own of course!) to donate to, I would highly, highly recommend this foundation. Besides my family, they funded 8 other families to attend the symposium. How amazing! But our trip wasn’t all rainbows and happiness…
If you are on the facebook page then you know… WE MISSED OUR FLIGHT! We were 5 minutes late to check in and were placed on standby. At first, it looked like we were going to have to go to Orlando to Houston to Dallas then finally to Austin… You guys have to understand my anxiety level here. Stranded in an airport all day with a CTD kid. I finally broke down to one of the poor Southwest employees and explained the situation, next thing I knew we were leaving Nashville to Dallas then to Austin. So thank you to the lovely young man who didn’t know what to do with a special needs mom and nervously found additional help to find me a flight to get us to Austin relatively easy! If only that was the only time I got emotional this trip!
As soon as we walked into the hotel I heard “Shelly?” it was HEIDI!! I don’t hug, I have a very personal bubble people do not enter… But I embraced this woman without hesitation! Heidi was the very first person to talk to me about Lilah’s CTD who wasn’t clueless about it. She was the very first “Mom Friend” who helped me in this journey. I will forever be thankful to this woman and if she wanted a hug, by goodness gracious I was going to give her a hug! That afternoon I met Whitnie and Melissa, and goodness it was like I knew them my whole life! Poor Melissa!!! I’m sure I wore her out just by asking all my questions! It’s not every day you get to meet an experienced CTD mom.
The next day was breakfast, taking Lilah to KidSpark Camp (which was WONDERFUL), then
This is how I felt when Guy Bogar (a man who had never even known I existed before) practically
I also would love to thank all the other mothers who can resonate with me and our daily battle with insurance. It’s definitely a frustrating battle, but one we would fight any day for our kiddos. Thanks to the mothers who had empathy toward our situation. Hana Young if I could pack up and live with you, I most certainly would! Haha. Your sweet girl and rambunctious boy were definitely some of my favorites to learn about. Erin Coller huge thank you for putting yourself out there and asking if anyone would pray with you! It was one of the best moments to sit with another mother whom I had never met before and enjoy a private second with God. I love your passion and courage you have in your faith! Please continue to remember me in your prayers because I can assure you my faith is nowhere near as strong as yours.
So pretty much what I can take away from my experience is, don’t let yourself struggle. This family we are a part of is too strong and too determined to let one of us fall behind. If you’re feeling alone, I assure you that you are not. One of us, or several of us, are going or have gone through the exact same thing or feeling. I promise. Don’t ever worry that you might be too odd, wacky, or unique to join our family! It just means you fit right with our “It’s so Austin” CCDS way of life!