Pain Points on the Disorder Channel with Daniel DeFabio and Bo Bigelow -This Festivus, Let the Airing of Grievances Begin

[00:00:00] I'm Effie Parks.

[00:00:05] Welcome to Once Upon a Gene, a podcast.

[00:00:08] This is a place I created for us to connect and share the stories of our not so typical

[00:00:13] lives.

[00:00:14] Raising kids who are born with rare genetic syndromes and other types of disabilities

[00:00:18] can feel pretty isolating.

[00:00:21] What I know for sure is that when we can hear the triumphs and challenges from others who

[00:00:25] get it, we can find a lot more laughter, a lot more hope, and feel a little bit more If not, go find me at Once Upon a Gene or Effie Parks. I am going to launch Once Upon a Gene Therapy. No, this is not gene therapy, where they go in and give you medications that were very expensive. This is mental and physical, emotional wellbeing therapy. It's going to be cool walking club and I have big dreams and big plans.

[00:01:40] I'm a little behind schedule on launching it,

[00:01:42] but I figured, you know what?

[00:01:43] What is better than just starting?

[00:01:45] Absolutely nothing.

[00:01:46] So I will release a couple of episodes here in case you're not following me on social media and we'll get started. And guess what? The walking begins on New Year's Eve. Okay? So stay tuned for that. I'm also taking just a teeny, tiny break. My husband took the week off for the holiday and so I decided to do the same thing. And magically I just have this wonderful episode of this rad show called pain points

[00:03:01] that appears on the disorder channel.

[00:03:03] You've probably heard me talk about that.

[00:03:05] It's a channel co-founded by my friends Pain Points, where each episode we present one example of what makes living in a family with a rare disease painful or difficult. And it's important to note, as always, we're not complaining, just explaining.

[00:04:22] In this episode, we're taking a look at how hard it can be for parents of kids with a sitter who you would only call when you're most desperate and who is so out to lunch, you probably shouldn't trust them with your pet rock. But even if you've solved the babysitter piece, it isn't easy. We were fortunate to have the same home health care nurse for my son for eight years. She knew his care backwards and sideways. She was willing to shift her schedule on a Friday or Saturday if we ever summoned enough

[00:05:43] energy for a part, and you say, thanks for coming in. We'll let you know. Please note, I am not suggesting you leave your kids

[00:07:00] with Samuel L. Jackson.

[00:07:04] But don't take my word for it.

[00:07:06] Let's go deeper down the rabbit hole Can you picture that? Have you done that lately? That is merely a fairy tale to a rare parent. For my friends with kids in typical health, this might be a fairy tale too, but theirs is like Cinderella, where everything is magical and your only concern is that it will end at midnight. For rare parents, it's more like the fairy tales where you start to worry that maybe

[00:08:22] you didn't do your due diligence on that nice lady with the house made of candy. And that drastically reduces the pool of possible candidates to a mere puddle. Half of the time, after a sitter hears the list of requirements, she backs out faster than Beyonce opting out of a Destiny's child group text. The other half of the time, they stop returning your calls and texts at all. Like I'm a tech pro trying to sell them on Bitcoin.

[00:09:42] And doing the song and dance over and over every time you need childcare is so exhausting I hope you've been enjoying this podcast.

[00:11:00] If you like what you hear, please share this show with your people and please make sure

[00:11:05] to rate and review on iTunes or wherever you get your podcasts.