Dude note: To help celebrate and promote Celiac Awareness Month, I will be writing 30 blog posts over 30 consecutive days (weekends excluded) with the theme “30 Days of Helping 30 Celiacs”. Each post will be aimed toward helping one specific person or group of people. If you or someone you know needs help, guidance, advice or a shoulder to cry on, please contact me and I will do what I can to help. On the 31st day, you’re on your own. Totally kidding.
Today’s 30 for 30 blog post is for: Lisa, whose passion and advocacy oozes for her 3-year-old daughter with celiac.
This post is not so much “helping” anybody, but is more of just a shout out. I’m a pretty passionate guy about a lot of things and when I see that passion in other people, especially when it comes to celiac, I just friggin’ love it and want others to experience it too.
So it’s Friday…I’m on my way to get a haircut…and I want to end the week on an uplifting note, because lord knows we need it.
It’s all you Lisa…
I know you’re busy, but I’d like you to know that not one post you create goes unnoticed by me. Hey, my daughter only turned 3 two weeks ago; we’re still very new to this. I’m still in the throws of PTSD over what it took to get my child diagnosed and how even my current GI specialists still get things wrong when they discuss her with me and say things like – itchy skin/rash because of celiac disease? Sounds more like an allergy….SOMEONE ALMOST HAD TO HOLD ME BACK. And BTW, we were misdiagnosed by a Yale GI specialist before the second hospitalization – YALE!!!!!!! They called it C-Diff after looking at a stool sample and sent us on our way….then the pedi told us possible cystic fibrosis – then, soon, she was laying on an x-ray table and they were looking for a cancerous mass. I can’t even begin to tell you. Then again, I know you already know.
Look, I firmly believe I’m supposed to put a voice to this thing called celiac disease. My kid has it, and I’m not going to just let this happen. I’m meeting w a 5K race producer to put a 5k run/walk together for awareness and funds for research, and you know what?? Good for me. And I know I’m rambling to you – it’s just that I find myself needing to be understood or heard – or that someone out there gets it. I almost find myself being strangely excited when the rarity comes along that understand where we’ve been and are. And if I hear one more person call it an allergy…
And you know what really sucks? Things like….at the Easter egg hunt on Saturday, where there was an aluminum-wrapped chocolate carrot that I didn’t know if there was “glue” in, my 3 year old toddled up to the Easter bunny that was there and gave it away so her belly wouldn’t hurt. THAT SUCKS. And I want to punch someone.
And it sucks at Halloween and it sucks that people will drop everything for a peanut allergy *not to belittle that population’s experience* but think that Celiac Disease is some new fad that really means nothing.
And I can’t begin to know what next September will be like when she enters pre-k and the journey will really begin. (I feel like I need to volunteer to make all the cupcakes for everyone’s birthday for the next 20 years just so my daughter won’t feel left out….) and on, and on, and on.
I’d be lying to you and to myself if I didn’t say that this is a marathon – not a sprint. I know what I’m up against. BUT – I’ve strapped on my running sneakers….and I’m ready. I think!
Please – keep up your work. Please. You’re teaching me daily.
I will just say one thing: Your daughter is in fine hands and your journey, while tough, will be a rewarding one.