Where the Glimmers Can Surface

[00:00:03] I'm Effie Parks. Welcome to Once Upon A Gene, the podcast. This is a place I created for us to connect and share the stories of our not so typical lives. Raising kids who are born with rare genetic syndromes and other types of disabilities can feel pretty isolating.

[00:00:20] What I know for sure is that when we can hear the triumphs and challenges from others who get it, we can find a lot more laughter, a lot more hope, and feel a lot less alone.

[00:00:31] I believe there are some magical healing powers that can happen for all of us through sharing our stories, and I'll take all the help I can get. Once Upon A Gene is proud to be part of

[00:00:45] Bloodstream Media. Living in a family affected by rare and chronic illness can be isolating, and sometimes the best medicine is connecting to the voices of people who share your experience. This is why Bloodstream Media produces podcasts, blogs, and other forms of content

[00:01:01] for patients, families, and clinicians impacted by rare and chronic diseases. Visit bloodstreammedia.com to learn more.

[00:02:02] They're coming back. I had to reprioritize some things and take a little break from how much work I was putting into the podcast and put it elsewhere, mainly my children. But they're coming back. School's starting at the end of August, so the show will be back on a

[00:02:16] regular schedule with your storytelling episodes and your episodes, okay? But today, I just like could not wait any longer to tell anyone what happened to us at the playground a couple days ago. Yes, the playground. I'm always talking about that playground. So I'll give you a little

[00:02:31] bit of an episode until we start them up again. Yeah, okay. So this was like definitely perfectly captures the rollercoaster of emotions that come with being a rare disease parent. We were at our

[00:02:44] beloved park, the one we helped renovate to be inclusive and accessible. It's downtown where we used to live. Ford used to obviously live downtown, so he knows where every single automatic door is

[00:02:57] on every single block. And I'm not kidding, you'll lose money if you bet against him. There is this one grocery store that we also used to live next door to that I really, really try to avoid with him

[00:03:07] because it not only has the automatic doors, but in the back it has a couple sets of those big black industrial like swinging doors for employees to go and like do all their restocking and stuff.

[00:03:18] And of course Ford loves doors. These black doors are not automatic, so they only swing when someone goes in or out. And Ford, being Ford with his determination has tested them a couple times by

[00:03:30] running his wheelchair into them. He doesn't fully understand that we are not allowed to do that and we have to wait for employees to come in and out and that we can't just be banging on their door

[00:03:40] with his wheelchair. Anyways, the other day I made the mistake of going because he had been being such a good boy and he's been getting so good in different areas of being patient here and there

[00:03:51] and we went at a slow time of day where most of the employees had gone home and the doors were not swinging and Ford was getting upset. And I stood my ground and I told him we couldn't do it

[00:04:03] ourselves and I suggested we just head back to the front and watch the automatic doors because that's awesome and he loves that and he's usually okay with automatic doors everywhere else. But he

[00:04:13] was not having it. No, no, none of my usual tricks worked. My calm voice, my bribery, everything. I pulled them all out. Nothing worked. It was just escalating quickly and then it happened.

[00:04:25] The ultimate meltdown. Ford flung his arm up to his mouth and he bit down hard. His arm from his wrist to his elbow is already black and blue from summer, you know how it is. And this

[00:04:39] time he bit so hard that it was bleeding from four points and I had to get the screaming flailing wheelchair kid out of the store while he was holding onto his tires so I couldn't move it

[00:04:51] and also holding onto his arm so he couldn't swat anything nearby or anyone. And meanwhile, feeling like every single eye was on me. Fun times. Anyways, we walked all the way back to

[00:05:03] the playground where daddy and sissy were and I told them that it was time to go. Casey could see my face. It was time to go. Ford was still wailing and even Casey with his magic touch

[00:05:15] could not calm Ford down. Then sissy came over and she started asking Ford questions, just like we do when we're trying to figure out what he wants or what he needs. And it was, it was so beautiful to watch this beautiful five-year-old better than any therapist we've

[00:05:32] ever worked with. She's just asking him all of these questions in, in such an intelligent way. And he's kind of ignoring her and saying no and just yelling. And she asks him if he wanted a

[00:05:47] special leaf bandaid. What's a leaf bandaid? I have no idea, but Ford said yes. That's how he says yes. So we're all saying it that way right now. Anyways, as he scurries away and she comes

[00:05:57] back with a stick and a leaf and she put the leaf on his bloody arm. Normally you can't touch Ford. You can't touch his owies. You can't put things on his body. Anyways, she puts this leaf on his

[00:06:10] bloody arm and she started gently rolling the stick over it and kind of like massaging it back and forth just really intentionally, I guess. And Ford just immediately stopped crying and

[00:06:22] she kept asking if it was okay and if it felt good. And he just kept saying yes, yes, yes. And then he was smiling. And then we were all just like hugging and we couldn't believe, Casey

[00:06:37] and I couldn't believe what we had just seen. It was just, it was so beautiful. And by this time, I was like, oh my freaking goodness. I have to get my phone out of my bag because I have to take a

[00:06:46] picture of this moment so I never ever forget it. My little as amazing Parks. The sister I have really honestly worried about for years for all the reasons, but because it just hasn't really

[00:06:57] seemed like she was connecting with her brother because of the hair pulling and the hitting. And I feel like she's now just finally agile enough to really dodge it all. And she's aware enough to

[00:07:09] know and loves him so much. And now she just nurtures, nurtures him in the way that he needs. It was a miracle. It was a moment. It was a glimmer and it was growth. It was a beautiful

[00:07:27] day in our park that we have so many memories of all shades. What would have left like a big lump in my throat and made me sit silently in the car to avoid being negative Nancy to my husband and kids

[00:07:40] turned into laughter and smiles and gratitude. Casey and I are both just telling them how happy they made each other and how happy they made us and how grateful that we were to be there.

[00:07:50] Mommy and daddy keep chasing glimmers my friends, just like in this rare disease life. Always. It's almost always those most annoying moments, but that's where we can really find them. That's where the glimmers can surface. I hope you've been enjoying this podcast.

[00:08:09] If you like what you hear, please share this show with your people. And please make sure to rate and review it on iTunes or wherever you get your podcasts. You can also head over to Instagram,

[00:08:20] Facebook and Twitter to connect with me and stay updated on the show. If you're interested in sharing your story, or if you have anything you would like to contribute, please submit it to my

[00:08:30] website at FEParks.com. Thank you so much for listening to the show and for supporting me along the way. I appreciate y'all so much. I don't know what kind of day you're having, but if you need a little pick me up, Ford's got you.