Last week, I wrote an article about thriving as the parent of special needs. In it, I talked about “finding your tribe”; a group of people in the same situation as you that you can share, commiserate and celebrate with. I said they would make your life better, even if you never met them in person and only ever interacted online.
Well, I have a tribe online, and yesterday, my tribe saved my soul.
The kids and I were at Hobby Lobby. I was trying to talk to the lady at the probiotic company that I had left a message with, because of course she called just as we’re trying to get out of the car! Jed was running around the store like a mad man. I was trying to keep the phone conversation going, chasing Jed, instructing him in undertones to clean up the messes he made, pushing the cart, and attempting to not lose my mind. As I finally ended the phone call, I saw that Jed had thrown a bunch of character lunch boxes on the ground and I firmly focused on him, telling him to “Pick those up and put them away.”
I started with “Please.”
I moved on to “Do it.”
It quickly escalated to “NOW, JED!”
And somewhere in all the insanity of my stupidly descending to a toddler’s level of arguing, I looked over to where Zac was sitting quietly in the shopping cart.
And saw him gnawing on a package!
Paper and non-toxic inks are just evil.
In all the toddler induced insanity, I didn’t notice Zac wriggle around in the cart so he could reach the things I had so carefully put outside of his grasp. He ate a TON of paper off this package!
I grabbed it from him, and something in me just snapped. The next thing I knew, I was sitting on the floor, right there in the middle of an aisle in Hobby Lobby, sobbing hysterically.
I overheard a fellow shopper telling an employee that “there’s a woman crying over there; I think because she’s mad at her kid. It’s so sad.”
(Great. Now people think I’m a lunatic AND a bad mother.)
Suddenly there’s the employee kneeling next to me: “Ma’am? Are you okay?”
And it spilled out: “No, I’m not okay! He has a chronic illness and eating paper makes him sick and I was so busy trying to keep his older brother in line which I couldn’t do because I was on the phone with someone from the company that makes one of his medicines asking questions that I didn’t notice that he’d gotten a hold of this and eaten it and now in about two hours or so he’ll probably start vomiting and then he’ll poop blood and he’ll be sick for I don’t know how long and I just…can’t…handle it anymore!” <more sobbing ensued>
She was very nice; she sat there through the whole thing looking suitably concerned. Jed even realized he’d pushed Mama over the edge, because he picked up all the lunchboxes without any further prompting and came over to me “Mama, cry? Ok?” and gave me hugs.
I skedaddled out of Hobby Lobby as fast as I could, though; it was embarrassing.
Still, when I got to the car, it was like the life just floated out of me. I could barely summon the energy to turn the key in the ignition.
I’ve been standing so strong, fighting so hard, pushing so far, for so long, and in that moment it felt like…surrender. Defeat.
Once again, I felt like a failure as a mother. Once again, I wondered how I could ever keep him safe from the unsafe things that surround us (especially when he seems to seek them out at every opportunity!). Once again, I wasn’t freaking prophetic!
So, I went to my Tribe: Darrel, and the FPIES parents (which, honestly, are mostly Moms) on Facebook.
After sobbing on the phone to Darrel for a while, he had to get back to work and we got off the phone. So I wrote the whole experience out for my fellow FPIES Mama’s…and they rallied in a way that I’ll never forget!
As the kids and I sat in the car, Zac sleeping, Jed playing with his toys, and me just trying to find the will to move, I read their responses as they came pouring in.
They’ve been there! They had a toddler who was just like Jed! They know just what it feels like to watch your kid chewing on something that will make them sick. They knew how a moments distraction can equal days of agony.
There was no judgement; no recrimination. There were shared tales of woe and reactions; “hang in there’s” and “hugs and prayers”.
It was glorious.
My spirits felt lighter with each comment that posted, until I felt I could handle facing my day again. I don’t know how long it would have taken me, sitting in that car, before I could have done it on my own.
My tribe pulled me out of the dark, and made my life better…just by being there; just by getting it.
Turns out, Zac never vomited! He had two horrible, awful diapers later in the day, but by bedtime, that was it for reaction signs! His behavior was good, his attitude was good, his napping was good…just the mucousy diapers that had trace blood in them.
Thank you, God!
Darrel and I aren’t sure if his system has just matured enough that he’s reacting with less severity already, or if the 5 days of probiotics have already made that big of a difference to his body, but either way, we’re grateful.
We decided to keep him on this probiotic, and we gave him another dose last night.
I knew I had to share the story of Zac’s reaction here; it’s sort of important to his story, after all. But when I was thinking of how to write it, I knew I could focus on Jed’s misbehavior, or Zac’s reactions, or how rotten I felt, and all would have been legitimate approaches to this story.
But our lives are so full of challenges right now; I needed to focus on something good.
So I wanted to tell you the story with the focus on how these beautiful women, most (or all) of whom I will probably never meet in person, took the time out of their busy, crazy FPIES lives to rally around a Mama in need.
They took the time to empathize and sympathize; to comfort and to share.
They became a Tribe, and the music they danced to yesterday was soul lifting and spirit strengthening (and further proof that 21st century friendships are WAY different than they used to be)!
So thank you thank you thank you to the ladies who stepped up yesterday to encourage me; I’m terribly grateful! With support like that, I feel like I can get through this FPIES monster! I can only hope I can offer that kind of support in return, should any of you ever need it.
Have you found your tribe?
