So, this video is hilarious, right? We can all identify.

Several years back, following her debilitating and life-limiting diagnosis, we took my oldest to Disneyland. Fun was had by all. Mostly.

One aspect of her diagnosis was that getting sick was very dangerous for her.

So we had this toddler for whom getting sick was very dangerous. Let me say that again, a toddler. In winter. Traveling. And getting sick is very dangerous for her.

We couldn’t possibly make the choice that we would not take her out in the world, especially with a likely short life span. And it often felt like we couldn’t possibly take her out in the world. And that was before Covid. You all…

So, I adorned all her grownups with copious amounts of hand sanitizer bottles, like flare in office space. You need more sanitizer bottles. And I kept packs of ultra-strength sanitizing wipes in several backpacks and the stroller. Everytime we sat down on a ride or at a table, I did a quick and thorough clean before letting the toddler touch anything. And, again, this was before Covid. You can imagine what folks thought. But I didn’t have the energy to imagine what they thought.

And here is just one of oh so many moments where we’re playing gently, happily, and out comes the tongue to lick the steering wheel that probably literally thousands of kids have touched. 

I held in my body, in this moment and always, these competing stories of a kid who stays as healthy as possible and a kid who has a full and happy life, with a mom who is not constantly emitting stress vibes. My nervous system and already-grieving, already-traumatized psyche had to balance the fear screaming at me and the calm, joyous, unforced play I committed myself to.

I think I mostly rocked it.

But it also rocked me.

Using our nervous system to make things okay when they are not at all okay is a lot of work. And sometimes, you just can’t do it anymore. And sometimes, it’s all this work that no one sees. So you’re coming home from an 18-hourm non-stop shift and are ready to fall apart, but all around you, people are under the impression that you’ve been resting and playing all day. They might even tell you to calm down. To not be a germ-a-phobe. Because kids get sick. It’s just part of the deal.

Except, in this case, if she got sick she might lose her speech. Or her ability to walk. Or her smile (it’s incredibly common for kids with her condition to be physically unable to smile). Or her very breath.

So the grownups trying to cultivate a hybrid of wonder and health for medically complex kids are always putting their nervous system on this intense and high-stakes balance beam. Except no one sees them on the beam. No one is spotting them. No one understands all that they are holding and trying to carry in a way where their kid could never guess that they are carrying it…

And what if, what if someone was next to the beam? What if someone said, “I see you!?” What if someone cheered them on? What if someone was available to help them step off the balance beam and fall safely on a luxurious pad where they can skip sticking the landing and just fall safely apart in private but not in isolation?

Now that I’ve sadly dismounted my balance beam, I want to be there for other parents. Other folks wiping down surfaces at Disneyland. Other folks saying, “Play hard! Explore!” but having their hearts climb up into their throats when a toddler explores as they always do, with their tongues. Other folks who hear, “Calm down,” and “Kid’s get sick,” and look around for someone, anyone, to understand that it’s not that simple for medically complex kids.

So, I’m hoping to start a parent-coaching training ASAP and pair it with some disability studies, pediatric social work texts, and deep inner knowing to make the road I trod a little easier for a handful of parents. It’s already so very hard. Isolation and being constantly misunderstood or having your hard work missed, unsupported, unpraised doesn’t need to be a part of it.

And if you’re a parent with an immune vulnerable or medically complex toddler reading this and laugh/crying at my kid literally licking Disneyland…I see you. You are amazing! You can rock this! And, you can also fall apart. I hope you have safe places for collapsing. If you don’t, reach out. ❤️

The coaching program I’m looking at costs $5000. And I can start it as soon as I can pay for it. You can help me do this work by visiting my GoFundMe. https://gofund.me/4ddf6ab5 

Thanks!