Beyond the Crossroads- Rebuilding and Reclaiming Identity After Sacrificing Careers for Caregiving with Emily Crawford

[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 one red club called Once Upon a Gene Therapy. It's a walking club. We're all motivating really. More like being rerouted on a hard detour and that annoying map lady won't stop repeating

[00:03:00] recalculating root.

[00:03:01] Okay, the journey of parenting, especially will probably discover a lot more magic. My guest today is going to take us through her

[00:04:23] experience and I think that you might hear some familiar things in your own of your entrance into this world of parenting medically complex kids? Of course. So I have four children, two of my oldest are twins, and then we have Chloe, our middle child, and then Brody's our youngest, our daughter Chloe, the first eight years of her life were seemingly normal. She was met all the benchmarks, and then when she was eight years old, she

[00:05:43] started presenting with some really unique symptoms that no one could figure out or describe. And so our body makes three liters of lymphatic fluid a day and she was dumping it all out. So those important things your body needs like your immune system, your vitamin D, the albumin that you used to pump your heart and keep your blood pressure normalized, all that was coming out of her. So an MRI revealed this mass like malformation all within her pelvic

[00:07:03] region and engulfs her colon and all her female reproductive organs. funny enough, I asked Santa for an overhead projector when I was eight years old. So I had the whole shebang, my dad even hung a pull down blind like from my wall so I could like pull down the projector screen and like put up my math problems and teach all of my American Girl dolls. So I kind of aligned my whole life to this dream. I went to college, I was a TA, I worked in the public school system

[00:08:24] for 10 years and I was kind of at the pinnacle loving the visual of your projector. I love that story. Oh my gosh, the emotional impact. Can you describe that sort of emotional journey perhaps you are about your career than some of us also. And I was wondering if maybe you could kind of dig a little deeper into some of

[00:11:00] those like initial struggles that you faced in terms of your emotional well-being

[00:12:03] and all my lessons would be thematically themed to dinosaurs. And it was just such a whole different shift for me where I got really dark.

[00:12:07] It was really isolating.

[00:12:08] My core group of friends are all teachers and so I would get together with them.

[00:12:12] And I felt like we had nothing to contribute to the conversation anymore.

[00:12:16] Like, what do they want to hear about how I had to drive urgently down to our hospital

[00:12:22] because Chloe's Brovac line broke.

[00:12:24] Like, I can't relate to what they're talking about in regards to student behavior or each other in our own stories in each other's stories rather. Right. Yeah. And it's a big loss and it's frustrating and it evokes a lot of envy and anger and sadness and grief and all of those things. And again, it's that isolation piece, right? It's another form of it that just starts stretching us further and further away from this reality

[00:13:40] that we thought we had.

[00:13:41] Yeah.

[00:13:42] I would say too, being home with Chloe, I was one of yes, and we should definitely talk about all that. Oh, my gosh. And I don't think every mom wants to be a stay-at-home mom. I think just like everyone has their own dreams, right? And what they want to do, some people are total job girls. You're obviously the kind of teacher that all of us parents want working in the schools, and some people just have a gift at being a stay-at-home mom, right? So I don't think anything sounds selfish like that.

[00:15:02] Can you talk about how you adapted or how you have been coping with the loss of your leaned into these friends who put in the time to learn about what I'm going through. And so they can sympathize and understand. And I just, I have a network of some really close friends who I can call and I make sure to make time for myself, whether it's just grabbing dinner with a friend or going to see a movie. And because like, I have told myself, while Chloe and my

[00:16:21] children are my number one priority and taking care of my family and Ford. Because if I am not taken care of and if I am not in tip-top shape, crumbles start falling down.

[00:17:41] And then there's landslides, right?

[00:17:43] And I think so many was like, oh wait, those friends don't actually exist where I live. And so I just had to, I was very intentional with which friends in my circle or which friends, even if they're, I had to make new ones, which are going to

[00:20:20] rook, not, don't still even have to relate, but who are going to sympathize and understand that one, I am going to learn that like some friends, I couldn't, I couldn't keep those friendships and take care of Chloe at the same time and had to let them go. So that sounds intense, but it was. It sounds very strategic and wise to me. And something you said about the friends that always have a disclaimer when they have something going on.

[00:20:22] I love that because everyone does that to us, right?

[00:20:25] Like our friends, we almost don't even know

[00:20:27] our other friends anymore unique relationships with each of them, but having to walk your child, and I have a, at this point, she's a preteen, and she is a lot to say, but walking her through these procedures and advocating for her and saying, you know, she can't do this procedure with anesthesia. Something very simple for her for most kids is a YouTube change out, right? It's a like changing an earring. Kalei has to

[00:21:44] be fully sedated just to get a YouTube change So Emily, I'm just like, how do we get someone over there to help you? So you can be a teacher again. Like it's breaking my heart.

[00:23:02] You need to be a teacher so bad in school.

[00:23:04] Oh my gosh. Okay. Let's talk about the courageous parents rooftops, but I kind of googled like pediatric, palliative care, support into like a Google and CPN came up. And so I just like deep dove one night into all their resources and sort of falling them everywhere I could. And every, it's one of those things where you're like, you're reading stuff and you're like, this is me. This is me. This is me. And I was related to so many of their resources

[00:24:22] and I would start watching these videos

[00:24:23] and hear these months talking and I'm like, oh my gosh.

[00:24:26] Like there are people out there. all wonderful people of life and Jennifer and Amy and they're just powerhouses and I want to be them when I grew up and I got found out I was a parent champion and then we all met in Boston and the first night we were there we sat around like a dining room table and I had imposter syndrome at first and I talked to them about it but at the end of the night I was in tears and I was like these are my people.

[00:25:42] Like I found people that understand what that's like. So that's been amazing.

[00:27:00] Also getting to just be mentored by Blythe type of parent, it's for parents who are raising medically complex kids. So really do what Emily did and go stock their website and peruse it and

[00:28:21] message people like her and Lindsay and Parvati and Jennifer and Blithe and all those people

[00:28:24] that are mentioned and they've all been on the show. Go don't have to do, you know, go to these conferences and present for rare disease and Chloe's disease. Like I have to do what, what means feels right to me and what's meaningful to me. And, and so that's what I'm working on in trying to figure out. But I panicked at first thinking like, I have to do all these things to, to be a champion

[00:29:40] or to be a good advocate for Chloe's disease

[00:29:44] or a child with palliative care.

[00:29:46] But I've realized like, it's always a dot dot dot what's next. So that's been a huge learning curve for me. One is how to advocate for fertility and like Chloe, I think she gets it from her mom. She is happiest around children and thrives around children. So if I can give her any shot at potentially being a mom

[00:31:04] someday somehow, I wanna make to. Yep. I will let you down. I'm just now diving in. Okay. Well, do you have any advice that you would give to other parents facing a similar situation in terms of maintaining their identity, leaving their career and just overall well-being?

[00:32:20] I think we spoke about it just one, taking enjoying this podcast. If you like what you hear, please share the show with your people and please make sure to rate and review on iTunes or wherever you get your podcasts. You can also head over to Instagram, Facebook and Twitter to connect

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