Chasing Glimmers - From Grief to Glitter: Parenting Through Infantile MLD and Embracing Life’s Full Spectrum - with Megan Gillet

[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. 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.

[00:00:43] Once Upon A Gene is proud to be part of 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.

[00:00:56] This is why Bloodstream Media produces podcasts, blogs, and other forms of content for patients, families, and clinicians impacted by rare and chronic diseases. Visit BloodstreamMedia.com to learn more.

[00:01:09] Hello and welcome to the show. This is Once Upon A Gene, and I'm your host Effie Parks. Hey, if you haven't joined my mailing list or if you don't follow me on social media, go do one of those or head to my website at effieparks.com slash events.

[00:01:26] We are having a wellness revival on January 25th at 12pm Eastern Standard Time. It's a three-hour virtual event. It's free. Come hang out with us. Come have a breath of fresh air in different ways, accessible ways, free ways that you can do at home to take care of yourself as a caregiver.

[00:01:47] We deserve it. We're going to have fun. There's going to be presents. I can't wait. The agenda is mostly up, but please, again, follow me to continue to have any updates. I can't wait to see you there.

[00:01:58] Today, we are having another episode of Chasing Glimmers, and I'm so excited. I have, of course, my amazing, beautiful friend Katie Lloyd, and we are joined by a really amazing mom, Megan, whose journey with her daughter Nellie has taught her the profound strength that love and resilience can bring.

[00:02:18] So Megan opens up a lot in this episode about the heartbreak of watching Nellie slowly disappear due to the dementia from MLD, but also the beautiful glimmers that keep her going and the moments of connection and smiles and memories.

[00:02:35] This conversation is really open and honest. Megan talks a lot about what she's moved through and some of life's most challenging moments, including her struggles with mental health before Nellie was born. Her story is one of finding purpose and worth and light, even when it's elusive.

[00:02:58] And it's about the power of holding on to love, no matter how difficult and finding strength in the moments that we have. She is such a super awesome, totally relatable and chill mom. I think you're going to love her. I am the only one without a beautiful accent. So you're welcome. You get to hear these beautiful ladies talk. And even if I don't have one, I know that this is going to resonate with everyone all across the world, accent or not.

[00:03:25] Please enjoy my conversation with Katie and Megan.

[00:03:31] Okay. Hello. And welcome to the podcast. I'm back with my chasing glimmers, girlfriend, Katie Lloyd. And we also have a really amazing, shiny guest today. And I'll let Katie introduce her since she was Katie's pick for this special episode.

[00:03:46] Hi, everyone. As you know, we into chasing glimmers, me and Effie. And when we came up with the idea, we both said we wanted to be a little bit more.

[00:03:56] We wanted to talk to people who are doing great things in the rare disease world and whose lives are touched by disability. And you already met Colleen, who we interviewed last time.

[00:04:09] And right at the top of my list as well was Megan. And we've been trying to pin her down for a while. It's not easy. Three mums who are also caregivers to rare children, but we finally made it happen, which is great.

[00:04:19] And you're going to see why Megan is a great candidate or a great guest for this show, because she has an attitude that I think most people would be surprised around if they heard her story.

[00:04:34] And I think you're really going to love what she has to say. I actually don't want to say any more.

[00:04:39] I just want to say that when I found Megan's Instagram, I just loved it. And I love her outlook on life.

[00:04:45] And I wish I could be more like that, because as I tell Effie all the time that I am a massive catastrophizer.

[00:04:52] And I am learning to be more positive. So I have a lot to learn from Megan. And I think she has a lot to share today.

[00:04:58] So I'll let her introduce herself, because I think she will say it better than I will.

[00:05:04] Oh, thank you so much. Did you want me to just tell you a little bit about Nelly? Do you want me to start there?

[00:05:09] Yeah. Hi, Megan. Welcome to the show, Katie. And I love you so much. And same Z's on the Instagram.

[00:05:15] Part of the Chasing Glimmers thing is about sort of people who put light out and, you know, kind of the whole full circle of like the emotional sort of journey that we travel and what we're going to take out of it and what we're going to pursue.

[00:05:27] And I think you're a really great example of sort of that Chasing Glimmers mindset in a world of really, really hard, hard stuff.

[00:05:35] So please introduce yourself. Let us know a little bit about you.

[00:05:38] OK, thank you. Yeah, thank you. That's the loveliest, kindest things you could say.

[00:05:43] I am Megan. I live in the southeast of England.

[00:05:46] And two and a half years ago, my daughter, who was developing normally, apart from the fact she couldn't walk, we finally got a brain scan as to why she, to sort of give us some answers as to why she wasn't walking.

[00:06:01] And we actually found out she had a terminal progressive brain disease.

[00:06:06] So that was in the May. And by the August, she could no longer walk, talk, like move, eat or drink, like sit up, anything really.

[00:06:17] So that was horrific. But we decided to sort of flip it.

[00:06:21] And we're just trying to give her the best life we can in the time we have her.

[00:06:27] Yeah.

[00:06:28] Oof, I'm not going to sit in the tumultuous times that obviously you dealt with from seeing that regression and getting that news.

[00:06:37] I just want to say I'm sorry that happened.

[00:06:39] And she's so beautiful and she's so lucky to have parents like you.

[00:06:43] And again, I'm really looking forward to hearing about sort of that switch and that transformation that you made in face of this really devastating diagnosis.

[00:06:53] Yeah, it was awful. And I think you're in shock in the beginning, I think for quite a long time, because it was like all of these like you think you're going there.

[00:07:02] And I honestly thought she was going to have cerebral palsy and I was sort of prepared for like that journey.

[00:07:08] And then we were sitting there and it all was like, bam, bam, bam.

[00:07:11] She's going to lose this. She's going to lose this.

[00:07:13] She's got a life expectancy of like four to six.

[00:07:16] And it was like a torrent.

[00:07:19] But she's just the light.

[00:07:21] Like you said, she's so beautiful and she guides us all.

[00:07:25] She handled it all with such grace that I had to too.

[00:07:28] Otherwise I would have been letting her down, I felt.

[00:07:31] Can you tell us, Megan, a little bit about, you know, what you mentioned before, kind of your outlook.

[00:07:36] So, yeah, I think you're quite unique because when a lot of people think about the news that you were given,

[00:07:43] I don't think most people would expect someone to react the way you did and you do.

[00:07:49] And I'm not saying it's all being plain sailing and, you know, sunshine and rainbows,

[00:07:54] but you definitely have a very strong and beautiful outlook on life.

[00:07:59] So can you share a little bit about perhaps where that came from?

[00:08:03] Did you always have it?

[00:08:04] Is it something that you've developed over time, like a muscle?

[00:08:08] And what is it that is so special about the way you see things?

[00:08:12] I think it definitely is a muscle.

[00:08:14] I'm very big on like creating new neural pathways.

[00:08:19] You know, if your brain is telling you one thing, I think,

[00:08:21] no, I'm going to try and train you to think another way.

[00:08:24] And I had a very tumultuous 20s and I didn't really, without getting too deep on you guys,

[00:08:36] I didn't think I was really worth anything.

[00:08:38] And at the age of 22, I attempted suicide.

[00:08:42] And I very nearly succeeded.

[00:08:45] I was in intensive care for four days.

[00:08:47] And it took me a really long time to be comfortable in my skin.

[00:08:53] And then when I had Nelly, I was like, no, I must be worth so much

[00:09:01] because I wouldn't have been given her otherwise.

[00:09:03] I thought she was like, and she is, but I really felt like I'd just been given

[00:09:07] the best blessing that anyone could be given.

[00:09:10] And I made the decision.

[00:09:12] I was already on that pathway because I was 31 when I had her.

[00:09:17] The suicide attempt was at 22.

[00:09:18] So it'd been a long journey for me.

[00:09:20] But having her, I was like, I'm never going to waste a second of happiness again.

[00:09:26] And when we got the news, I was like, this applies even now.

[00:09:31] Like, this applies even now.

[00:09:32] I'm not being tested in this way.

[00:09:34] I'm not going backwards.

[00:09:35] She's given me this gift.

[00:09:36] And I'll honor this gift.

[00:09:38] And so even the next day after the diagnosis, we went to a farm.

[00:09:42] And we pretty much went somewhere every day after that for like six months

[00:09:46] until I was like, whoa, this is too much.

[00:09:48] We need to rest.

[00:09:50] So yeah, I think that's where it came from, really.

[00:09:53] Megan, thanks for sharing such an intimate and profound part of your journey.

[00:09:58] And it really speaks to kind of the way that you were able to move from a place of darkness,

[00:10:04] right?

[00:10:04] And to find meaning from something like that.

[00:10:07] So thanks for sharing that.

[00:10:08] I know that someone out there who might feel really alone in their struggles will resonate

[00:10:13] with that.

[00:10:14] Also, as someone who has openly struggled with mental health in the past,

[00:10:18] and my first interview with Effie was all about that.

[00:10:20] I really appreciate when other people are very open about it too,

[00:10:24] because I think it does help us feel less alone.

[00:10:26] And it is so taboo, right?

[00:10:28] So it means a lot to me personally.

[00:10:34] I think that's the thing as well.

[00:10:35] I think where we don't, that's like, I feel like that's my skill in life is always being

[00:10:39] the loud mouth who says everything that no one wants.

[00:10:42] Like everyone's like, shh, not now, please don't say that.

[00:10:44] But I feel like that served me well in this.

[00:10:46] And yeah, and I think that, and I always share it as well, because I think when I was 22,

[00:10:51] I didn't want to be here and it took me a really long time to want to be here.

[00:10:54] And then there was a moment after her diagnosis.

[00:10:58] And my friend always talks about it as that was the only time I saw her cry.

[00:11:02] But she's like Nellie's godmother, so she's super close to her.

[00:11:05] But I was just crying to her going, the universe is testing me.

[00:11:08] It wants me to go backwards.

[00:11:09] It wants me to start self-destructing.

[00:11:11] And she was crying.

[00:11:12] She was like, no, it doesn't.

[00:11:14] And then sort of like the rebellious streak struck up me.

[00:11:17] And I was like, no, not going that way.

[00:11:19] And I think it is that like when you suffer with your mental health,

[00:11:22] you have to choose every day to feel differently in a way.

[00:11:26] And I think it's kind of the same with what we're going through with Nell's.

[00:11:30] I love that you sort of flipped that rebel script to being a rebel with a cause.

[00:11:35] I love that so much.

[00:11:37] And fighting back because of that rebel personality.

[00:11:40] That's how I see it.

[00:11:41] I think with MLD, I'm not going to swear on this podcast,

[00:11:44] but we had an expression.

[00:11:47] And even Nellie said a variation of it,

[00:11:50] which wasn't as naughty when she could still talk about her brain.

[00:11:53] And that's how we see MLD.

[00:11:55] It's like by having a happy life,

[00:11:57] if we were rebelling against her disease,

[00:11:59] that's how I feel like you can try and take it from us,

[00:12:02] but you won't.

[00:12:02] You won't take her spirit or our spirit.

[00:12:05] And I think that sort of is where the power comes from, really.

[00:12:09] Oh, my gosh.

[00:12:10] Well, I think if anyone's allowed to swear,

[00:12:11] obviously I'm outnumbered by two beautiful British accents.

[00:12:14] And I think it's OK when you all swear,

[00:12:16] because it sounds so pretty still.

[00:12:20] Maybe not in all parts of England.

[00:12:22] Megan, I'd love to know,

[00:12:24] kind of staying on the subject for a minute,

[00:12:26] about navigating the hardest days.

[00:12:28] You know, when everything feels particularly heavy

[00:12:30] or when you're kind of stuck in something

[00:12:33] or the regression is so apparent one day,

[00:12:36] how do you give yourself grace?

[00:12:37] And how do you still chase those glimmers of joy?

[00:12:40] And do you have any kind of like rituals or practices

[00:12:43] that really help kind of reset you

[00:12:45] or ground you or something like that?

[00:12:47] I think it's like a pattern.

[00:12:49] Like I said about the neural pathways.

[00:12:51] So today I was feeling really griefy.

[00:12:53] I don't know why.

[00:12:54] Nell had awful dystonia last night

[00:12:56] and I had to use her rescue meds.

[00:12:58] And I hate doing that

[00:12:58] because generally she's not on any medication

[00:13:00] and I'm really trying to keep her away from it.

[00:13:03] And I had to give it to her

[00:13:04] and I was cuddling her

[00:13:05] and I was telling her stories

[00:13:06] of how she used to talk to me about her dolls and things.

[00:13:10] And she was just looking at me

[00:13:11] and it just sort of triggered it in me.

[00:13:13] And today I was feeling it

[00:13:14] and I was messaging one of the other mums about it

[00:13:17] and I was like,

[00:13:18] you just have to lean into it, don't you?

[00:13:19] And I was like, you have to lean into the grief

[00:13:21] because I don't think it's not ever going to go.

[00:13:24] And so I think you just have to make peace with it

[00:13:26] and let it be a part of who you are.

[00:13:28] Like I think it's all about acceptance,

[00:13:30] like accepting life doesn't look

[00:13:32] how you expected it to look.

[00:13:34] And also you're never going to feel how you did before.

[00:13:37] Like life's broken

[00:13:39] and you have to like remould it

[00:13:40] into how it looks differently.

[00:13:42] So I accept it

[00:13:43] and then I had a little cry,

[00:13:45] I let it in

[00:13:45] and then I go back out

[00:13:47] and like I use nature massively

[00:13:51] because I kind of think

[00:13:52] if you can't see all the beauty around you every day,

[00:13:56] then you're mad

[00:13:57] because the world is presenting it to you.

[00:13:58] You just have to start looking.

[00:13:59] And I think that's like a really important pattern.

[00:14:01] You look for it every day in everything

[00:14:04] so that you get those,

[00:14:06] like you said, those glimmers,

[00:14:07] you get those little glimmers everywhere

[00:14:08] because you're so used to looking for them.

[00:14:10] I think if you are someone who doesn't look for them,

[00:14:12] you're not going to see them.

[00:14:13] But the more you look for them,

[00:14:14] the more you see them.

[00:14:15] And also I rely very heavily on exercise.

[00:14:18] I have to exercise every day.

[00:14:20] Otherwise I feel crazy.

[00:14:22] Oh my gosh.

[00:14:23] Yes.

[00:14:24] Every one of those.

[00:14:25] Definitely want to have another talk

[00:14:26] another time about neural pathways.

[00:14:28] But yeah, nature, community,

[00:14:29] letting your emotions in and through you,

[00:14:31] moving your body,

[00:14:32] reaching out to people,

[00:14:33] you said something that Katie said to me earlier this week,

[00:14:36] which I'm going to bring up

[00:14:37] and sort of turn a little bit here to you, Katie.

[00:14:39] You messaged me a few days ago or whatever,

[00:14:42] I don't know, time.

[00:14:43] And you said, you know, Effie,

[00:14:44] I was thinking I am usually a half glass full person.

[00:14:47] And when this whole idea of chasing glimmers came up,

[00:14:50] I was a little skeptical.

[00:14:51] But now that I'm looking,

[00:14:53] expand on what you were saying

[00:14:54] because you just said something very similar to Megan.

[00:14:57] I am from a family where, you know,

[00:14:59] the glass is half empty

[00:15:00] because the universe hates us.

[00:15:02] This is how I've kind of lived my life

[00:15:04] and all the lights are red

[00:15:06] because I don't know,

[00:15:07] the universe is broken.

[00:15:09] So I'm really trying to kind of change this mindset.

[00:15:13] Yeah, I think it is a practice.

[00:15:15] And I think it's like Megan says,

[00:15:17] it's not just, you know,

[00:15:19] you wake up and you can just do it.

[00:15:20] I think you really have to work at it.

[00:15:22] Like the other day,

[00:15:23] I was at a, this is so irrelevant,

[00:15:24] but at a traffic light,

[00:15:27] at a crossing with a train.

[00:15:28] And then anyway, it took forever to get a long story short.

[00:15:31] And I was just getting angrier and angrier.

[00:15:33] And my friend who I've been,

[00:15:34] you know, sharing my revelation with,

[00:15:35] she said to me,

[00:15:36] Katie, it's because the universe hates you.

[00:15:38] I had just started laughing.

[00:15:39] And I was like, it's so ridiculous.

[00:15:41] This mindset is so ridiculous.

[00:15:43] And I can't live this way

[00:15:44] because it's just not healthy.

[00:15:46] And I think all the things Megan's saying,

[00:15:49] like go outside and exercise.

[00:15:51] And yes, community,

[00:15:52] I want to circle back to that.

[00:15:54] They just kind of get you out of this loop

[00:15:56] that it's so easy to be in, right?

[00:15:58] And it's comfortable until it's kind of drowning you.

[00:16:02] So I am renouncing my catastrophizing ways

[00:16:07] and trying to move forwards in a more positive way,

[00:16:11] but it's not easy.

[00:16:12] You know, it doesn't come naturally to me.

[00:16:14] And I think Megan, you're saying it doesn't necessarily

[00:16:16] come naturally to you either,

[00:16:17] but you're working at it.

[00:16:18] And I think that's really valuable

[00:16:21] to share with everybody.

[00:16:23] Yeah, it definitely works.

[00:16:24] It just takes like, like I said,

[00:16:26] it's like a decade long practice for me

[00:16:27] where I was just like,

[00:16:29] I have to start noticing all these things.

[00:16:30] But now I do, like even if my worst days,

[00:16:33] I'll go outside and I'll be like,

[00:16:34] oh, look at that.

[00:16:35] I can't help it now.

[00:16:36] Like I just feel it.

[00:16:37] And then I think it takes you from,

[00:16:38] you know, like when you sit and you write,

[00:16:39] oh, I was grateful today for this.

[00:16:41] I was grateful for that.

[00:16:42] You don't need to sit and reflect

[00:16:43] on what you're grateful for anymore

[00:16:44] because you just feel it in the moment.

[00:16:46] You're so in the moment.

[00:16:47] You're like, this is beautiful

[00:16:48] rather than thinking later on,

[00:16:49] oh, what was nice today?

[00:16:51] Like you don't need to do that anymore.

[00:16:52] It's you, you feel that in the moment of it happening,

[00:16:55] but it takes, yeah, years of practice.

[00:16:58] I love that.

[00:16:59] Yeah, it's simple, but it's not easy.

[00:17:01] Yeah, just like repetitive.

[00:17:04] Okay, you guys can interview me in 10 years

[00:17:06] and see if I've improved.

[00:17:07] I think you both said so many important things

[00:17:10] and I hope people can rewind and listen to it

[00:17:12] because it serves all aspects too, right?

[00:17:15] Of what we're doing.

[00:17:15] And you can be in the wrong communities too

[00:17:17] or you could outgrow your community.

[00:17:19] You know, like it's for all of those things

[00:17:22] and for getting out of your house.

[00:17:23] And I just think that there's so many ways

[00:17:25] that you can approach it

[00:17:27] and you can start as small as possible

[00:17:28] to start kind of building yourself up

[00:17:31] in different ways

[00:17:33] to kind of help shift that mindset

[00:17:35] or notice things, right?

[00:17:36] Like maybe it is getting rid of the gratitude journal

[00:17:39] and moving the muscle on living in that moment

[00:17:42] and letting it kind of go through you

[00:17:44] rather than trying to remember it at nighttime before bed

[00:17:46] and writing it down.

[00:17:48] Yeah, I think so.

[00:17:50] And I think that's why Megan's Instagram

[00:17:52] is just so important

[00:17:54] because I know for me personally,

[00:17:56] you know, if I'm sitting at that traffic light

[00:17:57] waiting for the train,

[00:17:59] feeling myself catastrophizing

[00:18:01] and I see her sharing beautiful flowers

[00:18:04] and saying I'm having a great day

[00:18:05] when I know that things behind the scenes

[00:18:08] are maybe not, you know, hunky-dory all the time

[00:18:10] but she's choosing to focus on the beautiful things.

[00:18:14] It does kind of snap you out of that,

[00:18:16] this red light because the universe hates me.

[00:18:18] And it's, yeah, the message is really important

[00:18:21] and I think you're doing really great things, Megan.

[00:18:23] And I'm definitely coming out of this with your help.

[00:18:28] So I really appreciate that.

[00:18:29] The universe does not hate you, by the way.

[00:18:31] Yeah, so we'll have Megan's Instagram linked.

[00:18:33] It's Megan underscore mama underscore sunshine.

[00:18:36] So I'll have it linked so you can go look at it.

[00:18:38] But one of my favorite things about your Instagram,

[00:18:41] yes, is of course your beautiful outlook

[00:18:43] and your bright, shiny perspective

[00:18:45] and your gorgeous children

[00:18:46] and how you educate people.

[00:18:48] But it's also, can we talk about our outfits?

[00:18:50] Like, wow.

[00:18:52] Every single time I'm like, dang, she nailed it again.

[00:18:55] Like, I am so obsessed with just your whole look,

[00:18:58] your hair, your beautiful skin,

[00:18:59] your big eyes, your outfits.

[00:19:00] You look amazing and you make rare mamas just,

[00:19:04] you make it cool and you make it look like,

[00:19:08] hey, guess what?

[00:19:08] You're still a person.

[00:19:09] Absolutely.

[00:19:09] And you get to still wear this amazing crap tap

[00:19:12] if you want to.

[00:19:13] And you get to go and have this amazing pair of boots on

[00:19:17] when you're going and doing this hard thing.

[00:19:18] Like, you just make us look good.

[00:19:20] Thank you, Megan.

[00:19:21] I just think you have to just make life fun, don't you?

[00:19:24] Like, that's the thing, all part of it as well

[00:19:26] is like, it's your life.

[00:19:27] I just think you have to make it fun.

[00:19:30] And I think sometimes maybe I go a bit far,

[00:19:32] but yeah, I like to try.

[00:19:35] Thank you.

[00:19:37] Sometimes I wonder if people think these things are trivial,

[00:19:41] you know, and I don't know,

[00:19:43] having your hair doing on your nails or clothes,

[00:19:46] but I think when it is so easy to slide back

[00:19:50] into kind of dark habits or a dark place,

[00:19:54] these are the things that keep you kind of anchored.

[00:19:56] And they're not actually trivial at all.

[00:19:59] They're potentially life-saving

[00:20:00] when you are going through a really tough time.

[00:20:03] Yeah, and they're for you, aren't they?

[00:20:05] And that's what I think, especially like,

[00:20:07] when you are a mum of a child who has a rare disease,

[00:20:11] like, you have to be like, put yourself first

[00:20:14] without things feeling selfish.

[00:20:16] And I like that's, sometimes I think people must think,

[00:20:20] wow, like she's doing all these things for herself.

[00:20:22] But I think if you don't do all of those things for yourself,

[00:20:24] then you aren't going to be there for your children

[00:20:26] in the best way you can.

[00:20:27] And even if it is just getting your nails done,

[00:20:29] if it makes you feel better about yourself,

[00:20:30] then you should absolutely do it.

[00:20:32] I think anything you can do that boosts your own morale,

[00:20:35] then absolutely do.

[00:20:37] Because again, that's the same as looking for the glimmers,

[00:20:39] but you're just giving yourself those glimmers.

[00:20:43] Facts all day.

[00:20:44] Or we could talk about that for like 100 years.

[00:20:47] I'm so passionate about that topic

[00:20:49] of the caregiver remembering who they are,

[00:20:52] right?

[00:20:52] And putting little things together

[00:20:55] that are a part of you

[00:20:56] that maybe you'll notice when you walk across the room

[00:20:59] and you see yourself in the mirror

[00:21:00] on a day that you haven't slept for one week

[00:21:02] because of your child's dystonia.

[00:21:04] But you'll see like that one sparkle

[00:21:06] that you leave for yourself,

[00:21:07] whether it's your bracelet or your lipstick

[00:21:09] or that pink nightgown that you have,

[00:21:11] like whatever it is for you.

[00:21:13] Like I think it's so important

[00:21:14] if you can even just catch a whisper of it

[00:21:16] in the worst day.

[00:21:17] Absolutely.

[00:21:19] So yesterday I made a post

[00:21:21] that has been getting wild engagement

[00:21:23] through sharing

[00:21:24] and it was about grief and joy.

[00:21:26] So Megan, I know that Nellie has a little brother.

[00:21:30] Yeah.

[00:21:30] And I wonder

[00:21:32] if you can maybe speak on the balance of grief

[00:21:35] and joy of being a mother to two kids

[00:21:39] and maybe what advice you have for other families

[00:21:42] who are struggling to sort of hold

[00:21:44] both of these feelings at the same time.

[00:21:46] This is quite a wild one really

[00:21:48] because I got pregnant with Ozzy

[00:21:51] two months after Nellie's diagnosis

[00:21:53] and I think a lot of people wouldn't have done that

[00:21:57] but that's my rebellious impulsive nature.

[00:21:59] I just was like, I need to be pregnant now.

[00:22:01] I didn't even really know anything about the fact

[00:22:03] that obviously it's a genetic condition.

[00:22:05] So I didn't grieve basically.

[00:22:07] We found out and then I got pregnant

[00:22:10] and then I was like,

[00:22:11] well, I can't grieve what's happening to her

[00:22:14] because I've got this little life inside of me

[00:22:16] that I have to protect.

[00:22:18] So I felt like really unable to grieve

[00:22:22] and then this is just a side note to what you said

[00:22:24] but then I had him

[00:22:25] and I grieved so hard.

[00:22:29] I remember sitting there with this newborn

[00:22:31] just crying for all

[00:22:33] for the fact that he didn't have it

[00:22:36] and she did and it was like,

[00:22:39] it wasn't just a build up of all the grief.

[00:22:41] It was like the sort of like the grief of accepting

[00:22:43] that also like he was going to lose her

[00:22:45] and it was really strange.

[00:22:47] So having him sort of ignites the grief

[00:22:49] in lots of ways.

[00:22:51] I think that,

[00:22:52] but it also,

[00:22:53] like you said,

[00:22:54] it brings the joy

[00:22:55] and I think that's part of it

[00:22:57] is learning to accept

[00:22:58] that they both will coexist forever.

[00:23:00] You know,

[00:23:01] watching him be able to do

[00:23:02] all the things she can't

[00:23:04] and all the things she's lost

[00:23:05] and playing with all of her toys

[00:23:07] and it was a real journey

[00:23:11] but I can't not just feel like

[00:23:13] he's like the healer of my heart.

[00:23:15] He just heals me so much

[00:23:18] by just knowing that

[00:23:21] he doesn't have it,

[00:23:23] which I know is maybe a strange thing to say

[00:23:26] because it's not kind.

[00:23:27] It just feels like,

[00:23:29] yeah,

[00:23:29] he just is my healer really

[00:23:30] and he just brings me all my joy.

[00:23:36] It connects all three of us.

[00:23:38] Our first child had a rare disease

[00:23:39] and our second child doesn't,

[00:23:42] which is interesting

[00:23:43] and so I think we can all relate

[00:23:45] to the second child perhaps

[00:23:48] unsurfacing things

[00:23:49] that we've maybe kind of buried

[00:23:51] but also healing them at the same time,

[00:23:54] which might not make sense to the outside

[00:23:56] but I think there are a lot of people listening

[00:23:58] who will relate to that.

[00:24:00] Yeah,

[00:24:00] I was thinking about this earlier actually.

[00:24:02] I was in my bedroom cleaning

[00:24:03] and I was thinking,

[00:24:04] I wonder how it affects your feelings

[00:24:08] if the dynamic's different.

[00:24:09] If you have the child

[00:24:11] with the rare disease second

[00:24:13] so you've had a period of parenting

[00:24:16] that isn't with that sort of weight on it.

[00:24:19] Do you guys think,

[00:24:19] do you ever think about this?

[00:24:21] Does this,

[00:24:21] do you know what I'm saying?

[00:24:23] Yeah,

[00:24:23] all the time,

[00:24:24] every day.

[00:24:25] And I was thinking,

[00:24:26] I wonder if it would make,

[00:24:27] like how much difference

[00:24:28] it would make to your heart

[00:24:30] if it had been the other way around,

[00:24:32] like in terms of like

[00:24:33] the older sibling looking after you,

[00:24:35] just different things.

[00:24:36] I just was really,

[00:24:37] yeah,

[00:24:37] thinking about the dynamics

[00:24:39] of that,

[00:24:39] of the birth chain really.

[00:24:41] I was thinking about it

[00:24:41] in relation to,

[00:24:42] you know,

[00:24:42] to the glass child

[00:24:43] which I get trolled

[00:24:44] as the Aussie's a glass child.

[00:24:46] I get constant,

[00:24:47] honestly,

[00:24:48] so much trolling about it

[00:24:49] and he is about as far

[00:24:50] from a glass child as possible

[00:24:52] because he demands the attention

[00:24:54] just as he should.

[00:24:56] But I was thinking,

[00:24:57] I think because he's my second

[00:25:00] and because he has come in

[00:25:01] and healed so much,

[00:25:02] I don't know if that dynamic,

[00:25:04] if he could ever be a glass child

[00:25:05] because of that,

[00:25:06] of the dynamic.

[00:25:07] Yeah,

[00:25:08] that's interesting.

[00:25:09] We should probably have a conversation

[00:25:10] about that at some point

[00:25:12] with a family

[00:25:12] who had this flipped.

[00:25:15] I talk to him a lot

[00:25:16] and yeah,

[00:25:16] it's traumatic,

[00:25:18] right?

[00:25:18] I mean,

[00:25:18] it's all traumatic both ways.

[00:25:19] I think for me personally,

[00:25:21] whenever I think about that,

[00:25:22] I think about it

[00:25:23] as if like,

[00:25:25] man,

[00:25:25] if I had only had

[00:25:26] as you first,

[00:25:27] I would have noticed things

[00:25:29] in Ford

[00:25:29] the second it happened

[00:25:31] rather than have missed

[00:25:32] all of this precious time.

[00:25:33] Like,

[00:25:33] I would have known.

[00:25:34] I would have been able

[00:25:35] to like advocate better

[00:25:37] because I had had this experience

[00:25:38] and like,

[00:25:39] that's the only thing

[00:25:40] that I see,

[00:25:41] right?

[00:25:42] But I obviously hear stories

[00:25:43] from families

[00:25:44] who have had this flipped

[00:25:45] and it's of course devastating

[00:25:47] either way.

[00:25:48] But yeah,

[00:25:48] it's another piece of this

[00:25:51] that can be extremely difficult

[00:25:53] or that is extremely difficult.

[00:25:55] And I also just think

[00:25:56] you don't have that period

[00:25:57] of parenting,

[00:25:58] you know,

[00:25:58] like that grace period

[00:25:59] where you can just,

[00:26:00] I know I got like,

[00:26:01] because we thought something

[00:26:02] was wrong with Nellie

[00:26:02] from very early on.

[00:26:04] My mum was the one

[00:26:05] who kept saying

[00:26:06] there's something wrong

[00:26:06] but,

[00:26:07] and if they diagnosed her

[00:26:08] when we first started

[00:26:09] trying to get her diagnosed,

[00:26:10] they would have cured her

[00:26:11] and she would,

[00:26:12] this wouldn't be happening.

[00:26:13] I always think the same

[00:26:15] as that.

[00:26:15] I think I would have just

[00:26:16] had a longer period

[00:26:17] of not,

[00:26:18] of just like happiness.

[00:26:19] I don't know,

[00:26:20] do you know what I mean?

[00:26:21] That undiluted,

[00:26:23] you know,

[00:26:23] without the pain

[00:26:24] of having to be like,

[00:26:25] okay,

[00:26:25] I have to accept

[00:26:26] this is part of parenting

[00:26:26] just to have got parenting

[00:26:28] without that weight on it.

[00:26:29] Not that she's not a miracle

[00:26:31] and you know,

[00:26:31] like everything beautiful

[00:26:32] and I'm so glad

[00:26:33] but just that

[00:26:34] not having to parent

[00:26:35] with the pain on top,

[00:26:37] if that makes sense.

[00:26:38] There's definitely

[00:26:38] a juxtaposition,

[00:26:39] I think,

[00:26:40] whether we like it or not.

[00:26:43] Megan,

[00:26:43] I have a question for you.

[00:26:45] You've kind of alluded

[00:26:45] to your children's personalities

[00:26:48] but can you tell us

[00:26:50] a bit more about them

[00:26:50] and, you know,

[00:26:51] a lot of our therapists

[00:26:53] focus on what our kids

[00:26:54] can't do

[00:26:54] but can you tell us

[00:26:55] about, you know,

[00:26:56] what they can do

[00:26:57] and who they are

[00:26:57] as little people?

[00:26:59] Yeah, so Nels,

[00:27:00] before the MLD

[00:27:01] gave her the brain damage,

[00:27:03] she was extremely chilled out.

[00:27:06] She could sit and watch a film

[00:27:08] from 12 months old happily

[00:27:09] and I know this now

[00:27:11] because Ozzy can't stay still

[00:27:13] for more than two minutes

[00:27:14] so the difference

[00:27:14] and she would just be

[00:27:16] so fearless and everything

[00:27:17] and she still is both those things

[00:27:19] so she's still so chilled out.

[00:27:22] She's never had to go on medication

[00:27:24] to calm her

[00:27:26] where a lot of children

[00:27:27] with MLD have to go on that

[00:27:29] because obviously

[00:27:30] when they're losing everything

[00:27:31] they know what's happening.

[00:27:32] They don't understand

[00:27:33] why they suddenly can't move

[00:27:34] or talk or eat or drink

[00:27:36] or do any of these things

[00:27:37] but she's never had to

[00:27:38] because she's just

[00:27:39] so accepting of life

[00:27:41] and just so joyful.

[00:27:43] That's why it's so easy for me

[00:27:44] whereas Ozzy is

[00:27:46] just like this whirlwind of energy

[00:27:50] and he just detests me

[00:27:53] in a way she never did

[00:27:55] but in the most beautiful way

[00:27:57] I love it

[00:27:57] but yeah they're very very very different.

[00:27:59] Megan I wonder if you could

[00:28:01] talk about documenting.

[00:28:02] Again we're all obsessed

[00:28:04] with your Instagram

[00:28:05] because of your beautiful posts

[00:28:07] but everything that you write on it too

[00:28:09] and then just how much you post

[00:28:11] which I am so jealous of

[00:28:13] I wish I could figure out

[00:28:14] how to like batch stuff like you do

[00:28:16] but you just you describe

[00:28:18] everything so beautifully

[00:28:19] and I wonder if you have

[00:28:22] any advice for families

[00:28:23] on one how to document

[00:28:24] their memories

[00:28:25] in a way that feels meaningful

[00:28:26] and not overwhelming

[00:28:28] if they want to do this

[00:28:29] and also what has it done

[00:28:32] for you personally

[00:28:33] to be sharing your story

[00:28:35] on Instagram

[00:28:36] in the way that you do?

[00:28:37] Yeah so I love creating.

[00:28:40] I did journalism at university.

[00:28:43] My Instagram if you scroll back

[00:28:45] all the way to 2013

[00:28:47] is just me traveling and things.

[00:28:50] I always worry that someone's

[00:28:51] going to go all the way back

[00:28:52] and see all the old photos

[00:28:54] but it just started

[00:28:55] because lots we got a big

[00:28:58] GoFundMe when we got her diagnosis

[00:28:59] and then I sort of started posting

[00:29:01] to show where the money was going

[00:29:03] and then I just really loved

[00:29:06] making the videos.

[00:29:08] I love like I said

[00:29:08] I need to be creating

[00:29:09] and I had a little craft shop

[00:29:10] on Etsy before her diagnosis

[00:29:12] and I had to give that up

[00:29:13] because I just physically

[00:29:14] couldn't do it anymore.

[00:29:15] So that's what it's sort of

[00:29:16] it's become my creative outlet

[00:29:18] and I love to write

[00:29:19] so it's become that for me

[00:29:20] and I just think that

[00:29:24] documenting it all just

[00:29:25] it sort of reassures me

[00:29:26] of what we're doing.

[00:29:28] So if I'm thinking

[00:29:28] oh we haven't done enough for her

[00:29:30] I hope it's like

[00:29:31] is she happy?

[00:29:32] Are we like making her

[00:29:33] her days like filled?

[00:29:35] I can just go on my Instagram

[00:29:36] and I can be like

[00:29:37] yes I can see this

[00:29:38] we did this.

[00:29:39] So I think even if you

[00:29:40] aren't doing it

[00:29:41] for you like you know

[00:29:42] like for social media

[00:29:43] just keep it for your

[00:29:44] like photo everything

[00:29:46] like every time she smiles

[00:29:47] I try and take a picture of it

[00:29:49] because I don't know

[00:29:50] when her last smile will come

[00:29:51] like genuinely one day

[00:29:53] she will just not smile anymore

[00:29:55] and that will be nearing

[00:29:56] the end of her life

[00:29:57] and so I want to have

[00:29:58] recorded everything

[00:29:59] and I have like 20,000 photos

[00:30:02] on my phone

[00:30:02] and that's probably excessive

[00:30:03] but to me it means something.

[00:30:06] I don't know if excessive.

[00:30:07] Well I know that your Instagram

[00:30:09] is a lifeline to someone

[00:30:11] to many to thousands

[00:30:13] and I know from experience

[00:30:14] how important that is

[00:30:15] as someone who had to take

[00:30:17] and take and take

[00:30:18] in those beginning days

[00:30:19] when they were so hard

[00:30:20] and I was so grateful

[00:30:21] for people like you

[00:30:24] who made content

[00:30:24] in a book or a blog

[00:30:26] or a podcast

[00:30:27] or I found online

[00:30:28] so it's super important

[00:30:30] what you're doing

[00:30:30] and I love that it's

[00:30:31] both for you

[00:30:33] and for other people.

[00:30:34] Megan, thank you for being

[00:30:36] someone who casts a line out there

[00:30:37] to be a support to someone

[00:30:39] even if you don't know

[00:30:40] that they're grabbing a hold of that

[00:30:42] because it's helping

[00:30:43] so many people.

[00:30:44] Thank you.

[00:30:45] I spend a lot of time

[00:30:46] on my DMs

[00:30:46] talking to people

[00:30:47] at the beginning of this

[00:30:48] and that means a lot to me

[00:30:50] that feels like my purpose

[00:30:52] so I appreciate that very much.

[00:30:54] I think all three of us

[00:30:55] are people who

[00:30:56] in the early days

[00:30:57] reached out

[00:30:58] to people online

[00:31:00] and that just shows

[00:31:01] the importance

[00:31:01] of having a community

[00:31:03] because we are so

[00:31:06] restricted.

[00:31:07] You know,

[00:31:07] we're not going to

[00:31:08] bump into someone

[00:31:08] in the street

[00:31:09] whose child has our

[00:31:10] rare disease.

[00:31:12] It's highly unlikely.

[00:31:13] So that's for me

[00:31:15] why the internet

[00:31:16] is such an important tool

[00:31:17] for caregivers.

[00:31:19] Megan, I'd like to just

[00:31:20] circle back

[00:31:21] and talk about

[00:31:22] your writing.

[00:31:23] Anyone who

[00:31:24] follows you

[00:31:25] they already know

[00:31:26] how beautiful

[00:31:26] your writing is

[00:31:27] and I know

[00:31:28] that you

[00:31:29] would like to write

[00:31:30] a book

[00:31:30] or you are

[00:31:31] writing a book.

[00:31:32] Can you tell us

[00:31:32] a little bit more

[00:31:32] about your book

[00:31:33] plan?

[00:31:34] Yeah, I have

[00:31:36] written a book

[00:31:37] first draft

[00:31:38] but I've had

[00:31:39] a lot of no's

[00:31:40] from the agents

[00:31:42] so you have to

[00:31:43] get an agent first

[00:31:44] so I'm thinking

[00:31:45] very likely

[00:31:46] I'm going to

[00:31:46] probably self-publish

[00:31:47] it because

[00:31:48] so many people

[00:31:49] have said

[00:31:49] I would love

[00:31:50] to read this

[00:31:51] and it's in regards

[00:31:52] to lessons

[00:31:53] so it's

[00:31:54] it's called

[00:31:57] I was obsessed

[00:31:57] with the moon

[00:31:58] and it's a reference

[00:31:58] to her and my mum

[00:31:59] they would go

[00:31:59] looking for the moon

[00:32:01] and I felt like

[00:32:02] the moon's

[00:32:02] full of lots of wisdom

[00:32:04] so the idea

[00:32:05] is that it just

[00:32:05] is all the lessons

[00:32:06] I've learnt along the way

[00:32:07] like in motherhood

[00:32:08] relationships

[00:32:09] you know

[00:32:09] like how testing

[00:32:10] all of these things are

[00:32:12] in myself

[00:32:13] like in friendship

[00:32:14] just obviously

[00:32:14] your friendship change

[00:32:15] you lose lots of friends

[00:32:17] you gain lots of friends

[00:32:18] exactly like what you just said

[00:32:19] about the community

[00:32:20] and it's just all of the

[00:32:21] different things

[00:32:21] that I wish I'd known

[00:32:22] in the beginning

[00:32:23] and mainly

[00:32:24] that in the beginning

[00:32:25] when I thought

[00:32:27] smile or laugh again

[00:32:28] and life was over

[00:32:29] and just trying to show

[00:32:31] someone that

[00:32:32] that is not the case

[00:32:33] you will find yourself

[00:32:34] again and

[00:32:36] it's kind of like

[00:32:37] my Instagram

[00:32:37] but much bigger

[00:32:39] and much deeper

[00:32:39] and much less

[00:32:40] limited to captions

[00:32:41] so I would really

[00:32:43] love to publish it

[00:32:45] well I would love

[00:32:46] to read that

[00:32:48] oh thank you

[00:32:49] I can't wait

[00:32:49] to read that book

[00:32:50] yes

[00:32:51] oh my gosh

[00:32:52] I didn't even know

[00:32:52] that was

[00:32:53] that was happening

[00:32:54] until Katie mentioned it

[00:32:55] that's so cool

[00:32:56] I can't wait

[00:32:57] to read your book

[00:32:58] someday

[00:32:58] that's such an

[00:32:59] important message

[00:33:00] that like

[00:33:00] is literally

[00:33:01] a part of every

[00:33:02] cell in my body

[00:33:03] and I

[00:33:04] I can't wait

[00:33:05] to read it

[00:33:06] yeah

[00:33:07] I don't know

[00:33:07] if the same

[00:33:08] as you guys

[00:33:08] but like

[00:33:09] if something's

[00:33:09] going on in my life

[00:33:10] I instantly

[00:33:10] like will google

[00:33:11] to try and find

[00:33:12] a book on it

[00:33:12] and there was

[00:33:13] everything about

[00:33:14] like your child

[00:33:15] dying

[00:33:16] but there were

[00:33:16] I couldn't find

[00:33:17] anything about

[00:33:18] anticipating grief

[00:33:19] for your child

[00:33:20] and losing all

[00:33:21] these things

[00:33:22] and I just wanted

[00:33:22] to like yeah

[00:33:23] find something

[00:33:24] so someone googled

[00:33:25] it when they

[00:33:25] first got a diagnosis

[00:33:26] and realised

[00:33:27] that life

[00:33:28] is not over

[00:33:29] so I hope

[00:33:30] it's helpful

[00:33:31] I love that you saw

[00:33:32] a gap in the market

[00:33:33] and just filled it

[00:33:33] yourself

[00:33:34] and I mean

[00:33:35] that just shows

[00:33:36] how great women

[00:33:36] are and

[00:33:37] we just get

[00:33:38] stuff done

[00:33:39] right

[00:33:40] I'm having

[00:33:40] everything across

[00:33:41] that dream

[00:33:43] is fulfilled

[00:33:44] in the near future

[00:33:45] and that we can

[00:33:46] all enjoy your

[00:33:47] words in

[00:33:47] physical form

[00:33:49] it'll happen

[00:33:50] well Megan

[00:33:51] thanks for being

[00:33:52] our guest today

[00:33:53] thank you

[00:33:54] for spreading

[00:33:54] all of

[00:33:56] the love

[00:33:57] and joy

[00:33:57] and honesty

[00:33:58] and looking

[00:34:00] so good

[00:34:01] doing it

[00:34:01] online

[00:34:02] and I'm

[00:34:03] thankful

[00:34:03] that you're

[00:34:04] here

[00:34:04] and I'm

[00:34:05] so happy

[00:34:06] that you got

[00:34:07] to be on the

[00:34:07] show today

[00:34:08] with us

[00:34:08] I guess

[00:34:09] I would

[00:34:09] just say

[00:34:09] make sure

[00:34:10] you tell

[00:34:10] everyone

[00:34:11] where they

[00:34:11] can find

[00:34:11] you

[00:34:12] and

[00:34:13] if you

[00:34:14] want

[00:34:14] to leave

[00:34:14] anyone

[00:34:15] with one

[00:34:16] lasting

[00:34:16] thought

[00:34:16] that's

[00:34:17] kind of

[00:34:17] been

[00:34:17] burning

[00:34:18] in you

[00:34:18] lately

[00:34:19] that might

[00:34:19] be helpful

[00:34:19] that'd be

[00:34:20] great

[00:34:20] okay

[00:34:21] so I

[00:34:22] think

[00:34:24] mums

[00:34:24] parents

[00:34:25] we

[00:34:26] get to

[00:34:27] be happy

[00:34:27] I think

[00:34:28] one thing

[00:34:28] that we

[00:34:29] don't like

[00:34:29] to think

[00:34:30] in this

[00:34:30] is

[00:34:30] we also

[00:34:31] have a

[00:34:32] life

[00:34:32] and

[00:34:33] we

[00:34:34] might

[00:34:34] only

[00:34:34] get

[00:34:34] one

[00:34:34] life

[00:34:35] so we

[00:34:35] have

[00:34:36] to find

[00:34:36] a way

[00:34:36] to enjoy

[00:34:37] it

[00:34:37] and

[00:34:37] I

[00:34:38] think

[00:34:38] a

[00:34:49] thank

[00:35:00] you

[00:35:01] thank you

[00:35:13] thank you

[00:35:13] for being

[00:35:14] our guest

[00:35:14] and sharing

[00:35:15] your wisdom

[00:35:15] with us

[00:35:16] all

[00:35:16] thank you

[00:35:17] guys

[00:35:17] you were

[00:35:18] both so

[00:35:19] beautiful

[00:35:19] to talk to

[00:35:20] I appreciate

[00:35:20] this so

[00:35:20] much

[00:35:21] thank you

[00:35:22] I hope

[00:35:23] you've been

[00:35:23] enjoying this

[00:35:24] podcast

[00:35:24] if you like

[00:35:25] what you hear

[00:35:26] please share

[00:35:27] this show

[00:35:27] with your

[00:35:28] people

[00:35:28] and please

[00:35:29] make sure

[00:35:30] to rate

[00:35:30] and review

[00:35:30] it on

[00:35:31] iTunes

[00:35:31] or wherever

[00:35:32] you get

[00:35:32] your podcasts

[00:35:33] you can

[00:35:34] also head

[00:35:34] over to

[00:35:35] Instagram

[00:35:35] Facebook

[00:35:36] and Twitter

[00:35:37] to connect

[00:35:37] with me

[00:35:37] and stay

[00:35:38] updated

[00:35:38] on the

[00:35:39] show

[00:35:40] if you're

[00:35:40] interested

[00:35:41] in sharing

[00:35:41] your story

[00:35:42] or if you

[00:35:42] have anything

[00:35:43] you would

[00:35:43] like to

[00:35:44] contribute

[00:35:45] please

[00:35:45] submit it

[00:35:45] to my

[00:35:46] website

[00:35:46] at

[00:35:46] effieparks.com

[00:35:48] thank you

[00:35:49] so much

[00:35:49] for listening

[00:35:50] to the show

[00:35:50] and for

[00:35:51] supporting me

[00:35:51] along the way

[00:35:52] I appreciate

[00:35:53] y'all so

[00:35:53] much

[00:35:54] I don't know

[00:35:54] what kind

[00:35:55] of day

[00:35:55] you're having

[00:35:55] but if you

[00:35:56] need a little

[00:35:57] pick-me-up

[00:35:57] Ford's got you