The Special Needs Mom Podcast

When Motherhood Awakens the Fighter in You with Nikki McIntosh

• Kara Ryska • Episode 269

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In this episode, I sit down with Nikki McIntosh, founder of Rare Mamas® and host of the Rare Mamas Rising Podcast. Nikki is also the author of Rare Mamas: Empowering Strategies for Navigating Your Child’s Rare Disease, a book born from her family’s journey after her son’s rare diagnosis.

We talk about the shock of those early days, the fight for treatment, and what it’s like raising one child with a rare condition and another without. Nikki shares how she turned pain into purpose, creating resources and community to give other moms strength, strategies, and hope.

This conversation is full of those “me too” moments—reminders that we’re not as alone as we sometimes feel. Nikki and I also touch on the rollercoaster of emotions that come with parenting in the world of rare disease, from fear and grief to joy and fierce determination. Her story is a powerful example of what it looks like to fight for your child while still choosing to build a meaningful, hope-filled life.


Resources Mentioned



Hi, I am Kara, life coach, wife and mom to four incredible and unique children. It wasn't all that long ago that my son received a diagnosis that had my world come crashing down. I lacked the ability to see past the circumstances, which felt impossible and the dreams I once had for my life and family felt destroyed. Fast forward, past many years of surviving and not at all thriving, and you'll see a mom who trusts that she can handle anything that comes her way and has access to the power and confidence that once felt so lacking. I created the Special Needs Mom podcast to create connection and community with moms who find themselves feeling trapped and with no one who really understands. My intention is to spark the flare of possibility in your own life and rekindle your ability to dream. This isn't a podcast about your special needs child. This is a podcast about you. If you are a mom who feels anxious, alone or stuck, then you are in the right place. Welcome.

Speaker:

Hello and welcome to the Special Needs Mom podcast. In this episode, we are going to explore Nikki Macintosh's life story, mission, heart, all of the things. And there were so many times in this conversation that I felt like we come across something where I just felt so connected and I related to her experience, and it just was like so refreshing and. I think there's this, you know, experience about being with someone when you're kind of constantly saying, me too, me too, me too. That it almost has the experience of like giving you all the evidence that you're not alone. And it's one thing for people to tell us that we're not alone, but to hear another mom's story and to come to the conclusion ourself of, I am not the only one doing this. I am not alone here. I found again to be very hope filled. And yes, we talk a lot about our book and if you're listening to this live, it launched yesterday, September 23rd, and if you're not listening to this live great news, you can still go buy it. And of course, the links to go on Amazon or all the places you can buy books will be in the show notes so you can easily access it. It's a beautiful book written by a beautiful person with. Again, I feel like hope is the theme that I walked away after I got to review the book. And let's do a little bit more formal introduction'cause we wanna be professional here. You know what? We're a professional podcast. Let's give a professional introduction to Nikki. So Nikki Macintosh is the founder of Rare Mamas, a resource and community dedicated to empowering mothers of children with rare diseases, and the author of the new book, rare Mamas Empowering Strategies for Navigating Your Child's Rare Disease. Through Her Platform, the Rare Mamas Rising Podcast, Nikki provides strategies, strength, and support to mothers navigating similar challenges. See, just like what I said, her mission stems from the profound need she felt. After her son was diagnosed with a rare disease, fueling her with passion and purpose to offer lifeline of hope and connection to other rare moms. So let's welcome Nikki to the show.

I.

Kara:

Nikki Macintosh, welcome to the Special Needs Mom podcast.

Nikki:

Thank you, Kara. So happy to be here with you today.

Kara:

All right, well this has been a long time coming. We met, I don't know, what is it? We decided like five years ago, four years ago, and gotten to see each other since then. But thrilled that essentially we're gonna get to explore your story today, and that's gonna be the emphasis of our call. But before we jump there, I guess jump back in time. I wanted to get like, kind of snapshot a day in the life of like, you now. So kind of where you live, who you live with, like what's your life look like now, and then we'll kind of maybe, do a little gander, to the history of your life.

Nikki:

Sounds good. Well, so happy to be here and share my story. I live in Southern California. I have my husband and I have two sons, Mason, who's 15 and Miles, who's 13. So, we, the day in the life looks like chaos, like most of our day in our lives. My younger son is in eighth grade. My older son is in a sophomore in high school. So we're nav navigating middle school and high school and activities and physical therapy and medical appointments. And I straddle two worlds with having one child with a rare condition and one child that doesn't, is not affected. And so I'm kind of living both and trying to. Live a life of joy and hope and purpose amongst all of the challenges and obstacles. and so I think we're like a typical family in many ways and in many ways we're not like a typical family.

Kara:

I think that highlighting this part where you're straddling both worlds, I personally relate so much to that. And it's interesting'cause it, it's the part I think that it brings me such joy and delight and also so much grief. I'm thrilled to be supporting my oldest son as we're like right now we're in like making our college list and

Nikki:

Yes.

Kara:

kind of like this, like next part of his life. He just turned 18 and he's got a pretty great life and so that's so fun. And I think also it magnifies for us, this is part of my story, it magnifies. What's missing for Levi? He wants it. He longs for it. And so I think it's been a unique part of our stage of the journey. Sounds like, you resonate with parts of that as well.

Nikki:

to that. So, so well, yeah, kind of it opens your eyes to, you know, kind of both paths and

Kara:

I.

Nikki:

are similar and how they're so different. so yeah, you, you have, you're so excited for, you know, parts of it and there is grief for other parts of it when you recognize the differences or, you know, typical maybe rites of passage that one of your child won't be able to experience. Yeah.

Kara:

Yeah.

Nikki:

it is, it feels like straddling two worlds always

Kara:

Always. Okay. Well. Let's expand on the worlds that you are, you are navigating, that you're straddling. And I actually want you to take us back to the time before everything shifted, maybe when you were living in a singular world, what was like for you before you entered the world of rare disease parenting.

Nikki:

Oh, blissful, naive. This,

Kara:

All the things that you hoped it would be motherhood, right?

Nikki:

Yes. so my husband and I, we were married for five years before we had our son Mason, and we were working and traveling and, you know, then if we got to the point where we were excited to expand our family, or start our family, I should say, we had our first son, Mason. And, you know, you come in just like so many of us with all these ideas of what parenthood is gonna be and what your journey's gonna be like, and how you wanna raise your children and and goals for your future. I think, you know, we were living kind of a, I'm, I'm sure a story that many can relate to just, you know, working, working parents, raising a child, thinking about expanding our family and trying to just, you know, give our first son all of the love and opportunities and starting, he was just actually a toddler when my, when my, second son was born. So yeah, that was life before working. I had a career in advertising and marketing before. Before I stopped working, my son, my husband, we've, you know, just both kind of managing life with careers and kids. A kid, that was the

Kara:

Yeah.

Nikki:

that was the life before.

Kara:

When I was looking at your website yesterday, actually preparing for the episode, I was like, wow, this is like so beautiful and so good and all the things, and then I saw that you were in advertising and marketing. I was like, okay, now at least it makes sense.

Nikki:

Thank you for saying that.

Kara:

You like have professional level here. I was like, okay.

Nikki:

it's

Kara:

to aspire to.

Nikki:

is I never thought I'd be using it for these purposes, but yeah, all that, I guess it's coming in handy in the stage of the journey too.

Kara:

Well, well done.

Nikki:

Thank

Kara:

Well then it sounds like a very typical, blissful, lovely American life with everything going well. And then,

Nikki:

And

Kara:

and then

Nikki:

yes.

Kara:

was the moment or maybe series of moments that you started a whole new journey. So I'd love to hear a little bit about, What that looked like for you.

Nikki:

Yeah, so my second son, miles was diagnosed with spinal muscular atrophy, which is a rare neuromuscular disease, at 18 months old. he was. basically missing milestones. He had hit'em all up until that 18 month point, or actually about the year point when we noticed he wouldn't, pull up onto his feet to stand and take steps. And we knew what the milestones were because we had my

Kara:

Mm-hmm.

Nikki:

And so we started down the road of testing six months to, to get that diagnosis. And then that's where everything shifted.'cause we were not expecting a rare diagnosis. No one in our family had ever been diagnosed with this genetic disease. We'd never heard of it. And then, you know, and then our world kind of went upside down, fell apart, and we lived in that kind of shell shock state for months. yet there was no time to stay there. We had to get busy just getting everything into place for our son. and so we kind of dove into just that search for answers and next steps and, completely overwhelming emotional. Stage of life. and that was, you know, that was, we lived in that place for years while we figured it all out.

Kara:

Yeah. And as I hear your story, I think I'm reminded of my own where actually my two first boys are about two years apart and 21 months to be specific

Nikki:

22. Mm-hmm.

Kara:

Uhhuh. And up until when Levi was two years and three months, we were living a very typical life. We had no known understanding that we would be living. A totally different life, you know, come August 7th, 2011.

Nikki:

Mm-hmm. The dates. These dates we'll never forget.

Kara:

No, we actually, and'cause right now obviously we're recording this in August. And so we've just hit some of those milestones where we think back like it's been this many years and, you know, we celebrate a tumor termination day, which was the day of his first surgery. it, it lost a little bit of his power when we had like more and more and more surgeries like then the one surgery didn't feel like. Celebration worthy. But needless to say, we do try to do something special. But

Nikki:

I love that.

Kara:

what I was kind of gonna share is like that there is, is it's almost like, I don't know, there's something about having had the experience of have your son experiencing him on a typical journey

Nikki:

Yes.

Kara:

and then not

Nikki:

Yes.

Kara:

that I think for a mother is. I don't know. Like it's, I can say it's excruciating and I can say that, it's maybe even disorienting because, and I don't know if this was the same thing for you with Miles, but it was unclear exactly how much we were pivoting or not pivoting in the early days. And I know that you had some pretty, crushing early news as in this is a life, Well, at that time it was a life shortening

Nikki:

Yes,

Kara:

diagnosis.

Nikki:

the number one genetic cause of death in infants. That's the

Kara:

Yeah.

Nikki:

were told. Yes.

Kara:

The words that came out into the room, into your ears. And so when you think back to those moments, what do you remember thinking about or wondering about the most?

Nikki:

In the diagnosis moments or,

Kara:

Yeah.

Nikki:

yeah.

Kara:

the early, in the early days. In the early days as you were understanding how your life is taking this whole new trajectory.

Nikki:

It was such a wrestling match in those early days of to terms and acceptance. I remember early on just. Truly waking up first days after those first weeks after waking up every morning and just remembering my son had a rare disease and just falling apart. That was the, I'm, I'm tearing up now

Kara:

Mm-hmm.

Nikki:

about it. That was the feelings at the beginning of how could this be? It's such, it was such a cruel diagnosis. And how could this be? Because those moments before were so clear, you know, so full of happiness, so full of joy, a typical baby in all other respects except for. Some of those missing milestones. And so it just, it felt, un unreal. It felt like, how could this be? And so, but there, I couldn't sit in denial. He needed so much help. So, quickly I, while struggling with all of those emotions, it was forward steps. There was also a lot of thoughts of, And I'm sure this was, you know, maybe my naiveness at that point, like that is not, this is not happening. Like, not denial, but I will not allow this, let me fix it. There were a lot of, let me

Kara:

Mm-hmm. Mm-hmm.

Nikki:

right? Like dove into, I think those,

Kara:

Mm-hmm.

Nikki:

those mama bear feelings. I wanted to, to fix it and, and, And so it was that kind of, those, that duality of just being completely emotionally wrecked, but also diving into advocacy right away because I wanted to help my son and I wanted to fix it.

Kara:

Mm-hmm.

Nikki:

so it was, it was weird. I knew I was falling apart inside, but on the outside you might not have seen that because there I was making a zillion calls and going to all the things like so many of us, right? Because

Kara:

Mm-hmm.

Nikki:

needs you.

Kara:

Yeah, if you can look back at yourself or maybe even like ask the people around you in those days what they notice about you that maybe you weren't yet able to see or admitting. Like, what can you look back and see now that you couldn't see then?

Nikki:

I think I went inward a bit at that time.

Kara:

Mm-hmm.

Nikki:

meaning wasn't prepared to have lots of conversations with lots of people, about the specifics of the diagnosis and what it meant long term. I mean, I think a lot of people wanted that answer. What's the prognosis? You know, they wanted to

Kara:

Yeah.

Nikki:

that was that question, that looming question, what does this mean? What is the prognosis? And those were answers I didn't have. so it really, illuminated how much I needed to learn, right? All the answers I didn't have made it clear, oh my goodness, there's so much I need to figure out for my son. And so it made me go inward, and not wanting to have those hard conversations. I wasn't ready for them

Kara:

Mm-hmm.

Nikki:

And so maybe the outside looking in, it would be like, you know, I wasn't coming out to get the mail, you know, in those, in

Kara:

I was,

Nikki:

for fear of running into a neighbor and them asking me how I was doing and what's, how is Miles doing and what's the next steps and, you know, questions I didn't have answers to. Right. So,

Kara:

or. I think that questions, if you shared the actual answers, would create maybe more of a conversation than those people were willing and ready to have. I think in the early days, I think people would ask how, how we were doing, and I would want to actually answer the question, and I think I was desperate for someone to hear what we were going through, and then I realized. Oh, they were actually just doing the whole like, Hey, how's it going? Kind of question. And I was going into like really like sharing my soul with them

Nikki:

Yes.

Kara:

and, and I was like, okay. I got it. Not the time and place. Kira.

Nikki:

Right.

Kara:

Daisy.

Nikki:

Right. Exactly. And that's how I kinda felt too, like do we really wanna have this conversation over me, like getting my mail out of the mailbox? No, maybe

Kara:

Mm-hmm.

Nikki:

You're

Kara:

Mm-hmm.

Nikki:

home from work and just trying to check in.

Kara:

Yeah. Right.

Nikki:

Yeah.

Kara:

Yeah. Yeah. So, but yet I think deeply we wanna still be known in all of that. So you transitioned from, you know, this dance with, not necessarily denial, but kind of denying the predictable path that this would take as in. You were kind of fighting against, essentially what the doctors told you would happen. And actually one thing when I was reading Up about you yesterday that I, a line that I just was like, Ooh, I love it, is that you shared that your inner fighter was awoken.

Nikki:

Oh yeah,

Kara:

Oh, even the way she says it. See you, you guys can see this fierceness. So tell me a little bit about what that experience was and like what part of you this tapped into.

Nikki:

This just tapped into my, I guess, fighting underdog spirit. I don't

Kara:

Mm-hmm.

Nikki:

it just was growling right there the whole time. I mean, it was, not, I'm gonna lay down and accept this. It was, it was a guttural, I don't know, just instant instinct reaction. And I think that was so just that fierce, you know, love of, let me save, this is my child. I'll not allow this for my child. you know. many of us have this, and I'm so thankful that we do, because I think this is why, how moms, you know, go on to do like what you're doing, all the advocacy you do, and to help others. And, you know, people are starting organizations for their, you know, to help their child's disease. And this is that I will not accept that answer and no, I will fight for my child. And, and that fighting forward is, oh, there's a lot of great outcomes that come out of that, you know, out of ignoring. The, you know what we're told. I'm glad we're stubborn and we don't listen sometimes because there's a lot of good that can come out of that. But for me, yeah, that was kind of a instinct, instant reaction.

Kara:

Actually what's funny is, after I record this with you, I'm gonna be recording a episode with a friend who I work used to work with in a totally different industry.

Nikki:

Hmm.

Kara:

And one of the things I love about her and she got to witness in me is how much trouble I got myself into because I will not accept this answer, as in no, does not work for me

Nikki:

Exactly. I'm not gonna

Kara:

and. And it's something that I love about myself, but I do also recognize i'm joking that I got myself into a lot of trouble, but I did truly actually make a lot of people upset. And I know people are surprised to hear this.'cause I, I seem really nice now, but people are like, oh, you, you maybe. I was like, yes, people, I gave people bad dreams is what I did. They told me

Nikki:

really funny.

Kara:

and I was like, well, I still think that's kind of your problem,

Nikki:

that's

Kara:

mine. But, I'm looking forward, forward to reminiscing with her. But I guess there's this part, As we kind of focus in on this part of you that became ignited, or even became more fully alive, I feel like it's actually one of the things that I think I can say that I love about having gone on this journey, is that I feel like I actually got to. Figure out who I was. And so do you think you knew to the extent at which you had that inner fight before you embarked on this particular journey

Nikki:

Yes.

Kara:

you did? I was like, she's like, I knew it already. Tell me a little bit more about that.

Nikki:

I think that's just, you know, part of my personality. If anything, I have to

Kara:

I,

Nikki:

that little inner fight of mine that, that's more of my personality. this

Kara:

she's like, she was just waiting to come out to play. She was waiting.

Nikki:

was just reason to unleash, unleash her, just definitely in a much different way because it, when it's on someone else's behalf, you know, it's much different.

Kara:

Yeah.

Nikki:

this

Kara:

Yeah.

Nikki:

this felt, This felt right. This felt like the most, meaningful reason

Kara:

Mm-hmm.

Nikki:

un to unleash that fire light. That fire.

Kara:

Yeah, definitely. I think so many of us will fight harder on behalf of somebody else than sometimes we even will for ourselves. And I actually personally think that that is the beauty of motherhood is that you can see how rich and how deep this love that we have for these children, goes. And I think that's a beautiful thing. I wanna kind of go back to, You know, we talked a little bit about the early days and about how, you kind of were called to transition from, the devastation, kind of to determination to figure out what to do next. I'd love to hear a little bit more about that part of your story as I know that you. And your husband successfully f found a, i, I dunno if it was in clinical trial, but a treatment, that was in trial for your son, which ultimately then became FDA approved and now is a treatment.

Nikki:

yes.

Kara:

And so walk us through that time in terms of like who or what showed up, to kind of, you know, mentor you, guide you, and help you navigate this whole new world. And again, kind of tap into that determination to find the answers.

Nikki:

Well, I would say that one, we're very fortunate. We had a, the diagnosing neurologist. Tell us about the patient advocacy group. the leading p patient advocacy group for our child's, rare disease, spinal muscular Atrophy Q-R-S-M-A. So we were one of the fortunate ones, right, that were handed here isn't a group that may help,

Kara:

Mm-hmm.

Nikki:

Right? So that doesn't always

Kara:

Yeah.

Nikki:

And there's not always a patient advocacy group

Kara:

Uhhuh. Yeah.

Nikki:

We learned that later. And then we obviously now feel very fortunate that there, there is one for, for SMA. right away we plugged into the QSMA organization and that was a wealth of knowledge support, care protocols. And they were leading a lot of the, the research and so they. Made us aware of the research that was going on. We were digging around on our own on clinical trials.gov and kind of, you know, doing our own research as well. And they kind of told us, you know, informing us about the trials that they were funding and supporting. And so we dove in really quickly with fundraising for research. that we kind of kind became quickly our, our advocacy efforts. Because we believed that they were, you know, on, they had some things in, in the pipeline that were showing some promise. And so once we learned about it, we kind of dove in and learned everything we can, could, and tried to decipher what we thought was the best avenue for our son. We found the clinical trial that we thought was. You know, showing promise. We re researched his death and we fought really hard actually, to get him the trial. And once he was enrolled, it was a blind study, so there was a, it was placebo

Kara:

Mm-hmm.

Nikki:

didn't know if he would receive the drug or not, or the placebo. quickly, pretty quickly after being diagnosed. We were pretty certain he was receiving the drug, but we wouldn't know for sure.

Kara:

Mm-hmm.

Nikki:

but because we saw some of those, SMA causes muscle weakness, we saw some of the weakness that he had lost being restored. so flash forward 2016, it was the first FDA approved treatment for SMA. So it's been a ride. It has been a ride from those early days of that diagnosis. No treatment, no cure progression, inevitable degenerative disease, and number one, genetic cause of death in infants. To the viability of a clinical trial, possibly a treatment, and then a beginning, FDA approved. And so, and we were just on the ride for all of this, and now it's FDA, approved our community, you know, is being treated. There are two other FDA approved treatments for SMA. There are is more in the pipeline, more coming. So how many emotions did I have through all of that? Probably every single one of them there could be had because it was such a ride,

Kara:

Yeah,

Nikki:

of emotional ups and downs, at each different peak point of that journey, right? put your child in a clinical trial, you have questions, you have your hesitant, you have

Kara:

I.

Nikki:

you know, it's, so many unknowns you're making, you wonder if you're making the right decision. You know, the path is unclear. And then for it to be viable and get, and then make it all the way through trials to FDA approval, then we're celebrating a, you know, approved treatment. We know what that means. We know how rare that is. We know how many, you know. Trials fall out of the process. and so, and now to be seeing our community and the differences it's made in our community just since the time my son was diagnosed, and he received treatment to now the, you know, these, SMAs on a newborn, newborn screening panel. And so. are being diagnosed and treated within the first like 30 days of birth. And the outcomes are just, they're so profound. It's such a joy to see, how far we've come. was a

Kara:

Yeah. No, it was, I mean, I think.

Nikki:

long ride.

Kara:

I think what really, is highlighted is like you, you know, you used the word rollercoaster and it's like up and down and up and down hope, and I don't know what word we use for the down, but,

Nikki:

Unknown.

Kara:

And fear,

Nikki:

Yeah. Fear.

Kara:

I don't know. Yeah. Hope and fear and hope and fear and hope and fear and, and dancing in that. you know, and it's not like, you know, are you gonna get this job right? Like that kind of hope and fear. It's like ultimately, is your son gonna live and or be, well, like, these are not like trivial rollercoasters that we're riding

Nikki:

Yep.

Kara:

And not everybody, Does have the fortune of having the ft, you know, backed drug that they get, right? So some of, you know, many of you listeners are gonna, you know, not yet be there. And so like living in the back and forth, back and forth, I don't know how this is gonna go, but I, I do know enough to know that it could go quite poorly. I mean, that's a lot for a mother, for a family, for a society, for a culture to hold. yeah, and that I think is where we, I think about being parts of communities, whether, you know, it's the rare community, whether it's special needs community and or the combination of the both of them of being able to be with people that hold that, not necessarily with answers, but hold that and can say like, yeah, I understand. I'm there with you.

Nikki:

yeah,

Kara:

that could be so helpful.

Nikki:

I know the, you know, the significance was not lost on us. We knew how, how rare it is for, you know, a, a treatment like this to get FDA approved and we know what it meant for our community and we also know what means for the bigger rare disease community. and we. Feel it's important to share our story because we want bigger rare disease community to, to have hope

Kara:

Mm-hmm.

Nikki:

know, you know, what can be, these, you know, parents of. Children with SMA years before my son was born, their children to this disease and stayed in the fight advocating and championing and fundraising, and my son is the beneficiary of all of that work, those years of work. And so, you know, I also feel, the same, I guess, duty, to do the same for the next generation of patients, not just with SMA, but in the rare disease community.

Kara:

Yeah, definitely. And I think I, I do see in different, spaces, I see, those parents who are bereaved parents, doing the same thing. And it is really, it speaks to, I think, the extension of love that they still have for their child of like, that, you know, serving, and saving other people from what their child had to suffer. I think it's like, you know, these things obviously tap deep within us, so, you know, there's this rollercoaster that you're still on, right? Like, you know, it's not like you, this is not like, not like, oh, okay, everything is back as it was back when you had these Darlene, you know, baby and, and two and 3-year-old. What do you feel like has shifted in you during this essentially, death of your old life, rebirth of your new life? What do you feel like has shifted or grown or changed as you've taken this ride?

Nikki:

I will say what's changed is I no longer, feel the need to make my life fit in a mold that it doesn't

Kara:

I.

Nikki:

I can accept and find beauty and joy in. Our life as it is.

Kara:

Mm-hmm.

Nikki:

that, I remember when that shift happened, it was pretty, it was pretty profound because trying to make my life fit in these molds that we maybe have, you know, that we see around us and our communities and our schools, whatev whatever, you know, these different, areas. ourselves, places we find ourselves, it's so difficult, right?'cause our path is different. We have to do things differently. And so trying to make it fit and trying to make us, you know, mold into these places, you know, I just, it was, it's exhausting.

Kara:

Mm-hmm.

Nikki:

remember the point, I was like, I just really don't care anymore to do that, and I don't really care. everybody else feels about it. want to serve my family and I want us to be able to find our joy and our happiness and our connection despite all of this. And if that means everything looks different, that's okay. So I think that came, know, with time and you know, time shed's perspective. And so I think that was one thing at the beginning, maybe I was trying to, you know, make it all work and

Kara:

Like kind of hold on to the typical life experience, it sounds like. And then you had to recognize, I have to let go of that. Like, it just, it's not fitting, it's like shoving something and almost like, it was like a reluctance to really embrace this new life that you now have. And it was like had to let go of that you were holding onto.

Nikki:

Yeah. And I think at the beginning, you know, were, it was just. Not knowing that there was a different way to do it.

Kara:

Mm-hmm. Yeah. Yeah.

Nikki:

know, it was just that we learned along the way. And so we were still trying to enjoy our life and do all the things and have our happiness and find our joy and, you know, our time with our family and what we were trying to do in outlets or in manners that maybe were more typical, and that were difficult because of that. So this was a, you know, finding, opening our eyes to new ways to, to do those things To have that same meaning and joy and happiness, but just in different ways.

Kara:

Are there any ways specifically that you would share that you can think of off the top of your head that kind of what that actually, tangibly looks like?

Nikki:

well, sometimes we would say yes to going to certain things. I'm trying only try and think of an example. I don't have a good one off the top of my head, but just for example, if going to an amusement park with friends is normally what, you know, another family or something is maybe what people do for fun or, you know, that sounds, Exciting. But then when you actually go there and you realize it's really difficult to do right, because it's a crowd of people and my child's in a wheelchair, and so we have to wait in a different line and do the thing different and it, you know, may take longer or, We're exhausted, we're trying to keep up. And then at the end of the day you go, was that even fun? Did that

Kara:

Mm-hmm.

Nikki:

any

Kara:

Mm-hmm.

Nikki:

happiness or joy or, you know, deeper family connection, which is what we went for, right?

Kara:

Mm-hmm.

Nikki:

Maybe not.

Kara:

Mm-hmm.

Nikki:

that's not where we're gonna find it. Maybe we're not gonna do that thing that, might be on most people's, you know, list for the summer or something. Maybe that's not it for us. Right? Even, you know, even we live close to the beach, so even going to the beach is not

Kara:

Mm-hmm.

Nikki:

son is in a wheelchair, so navigating a beach is not. and that's hard because we live

Kara:

Yeah.

Nikki:

one. And that is what our families do here for fun And And, but a pool is great. A

Kara:

Mm-hmm.

Nikki:

for our family and my son loves to swim and he can, and he is weightless and it's actually like amazing for him. Body, mind, and spirit. And when he's swimming in the pool, he's pure level and he's one of the kids. So there it is. Okay. That's

Kara:

Yeah.

Nikki:

for our family. So maybe we're not going to the beach, but we're going to the pool, right? And that's just a silly example, but, that's it. Finding ways that that fit. And actually at the end of the day, do bring us joy.

Kara:

Yeah, and I think when I hear this story, it's like grieving that the beach doesn't really work for your family. I'm not quite ready, to let go of the beach for my family. Levi doesn't love that.

Nikki:

Yeah,

Kara:

would much prefer that we let go of the beach. But that's neither here nor there. And alright, so that is a

Nikki:

I'm saying? You can relate

Kara:

Oh I a hundred percent. Well and I think part of it too is that Levi once loved the beach. It was a place,'cause water is a place where it supports him in a lot of ways. more when he was littler than, than now. But I think there's part of. My husband and I wanting to fight and advocate for him, to restore parts of him that have declined,

Nikki:

Yes.

Kara:

that we hold on to hope, that don't have to stay declined.

Nikki:

Mm-hmm.

Kara:

And so there's part of like, okay, like if we keep going to the beach, if we keep at it, we'll get back.

Nikki:

Right.

Kara:

so, it's still like, you know, I, I'm like, okay, it's not ready to let go of that. It's not ready to say, okay, that chapter's closed, but. I do say this with humor is like, but Levi again would prefer that we close that chapter and just go to pools.

Nikki:

you

Kara:

and you know

Nikki:

of your family to think about too, so it's, that's

Kara:

Exactly. Exactly. Exactly. Exactly. It's the straddling and that's why I took myself to the beach all by myself the first day where they went to back to school last week.

Nikki:

did the same all by

Kara:

Oh,

Nikki:

like,

Kara:

oh.

Nikki:

the beach by myself,

Kara:

It's so great because I, the listeners of the podcast will know. Well if you're, if you're not a new listener, I shared the story where, and okay, I dunno if you, you probably didn't hear the story. I out in the water. I encountered another special needs mom that I had met a retreat a few months ago. I know out in the water, right? You know how this works, right? Like there's a million beaches you could choose. We both chose the exact same beach we were out there literally having fun in the waves in our own ways. And we're like, wait, we know each other. And, and then we actually said, how many other moms do you think there are like this? And I said, not a lot. I think it's just you and me.

Nikki:

to have a water

Kara:

but you, but you were up there too, maybe a different day, but.

Nikki:

I

Kara:

I get it. I actually did think to myself was like, this could be a great, like just get the moms out in the water. Like, and I know not every, not every, person loves the water, the ocean, but I am, I am a lover of the ocean, so.

Nikki:

You just, but you did find a way to get to the beach and I found a way to get to the beach. Right? So it might not be the family outing for me, but I went by myself.

Kara:

Mm-hmm.

Nikki:

that's just like finding other ways, right?

Kara:

Yeah,

Nikki:

was okay, this may be not what we're doing as a family all the time, but I still love it and I miss it and I. Same thing. I find that I find the ocean soothing

Kara:

I.

Nikki:

and just the whole atmosphere is, is a place of peace for me. And so I still need to incorporate that into my life. So that looks like, yeah, I go maybe by myself when I can.

Kara:

Yeah. And so same thing I think of like, okay, camping with my family. Like we were, like we were the camping family. Like we love a good REI run by gear that we don't probably need, but and so, and we're still figuring out how to make that work for our family. We are always talk. We actually just camp this weekend. So that's why I think of it. But always thinking of maybe if we get a trailer to make it easier for lever, maybe this, maybe that. And so it's like finding ways to make it work or you know, maybe it's like, Hey, let's do, like, let's divide and conquer. We do a lot of dividing and conquer and having. Certain people that are more interested and able to do other things and and then there's some great answers found there, and then there's a lot of grief that comes with that because ultimately I would love all my family to be together and my family would love that too. So

Nikki:

Same.

Kara:

it's a important part of the story, I think, to share because I think we're all simultaneously experiencing it and navigating it together. Okay, so As you find yourself here today, one of the things we're gonna talk about is your new, almost released book that is coming to life or has come to life and you share a lot of this in your book, but, and just kind of wanna give a moment to highlight like what you carry with you now. Like what are the gifts, the lessons, the thing that you would most give to others if you could, that you have. Benefited from in navigating this journey.

Nikki:

I think. Being on the road a while now, I see that there is a clear choice of what I allow to come from this. what do I allow to rise out of this, out of this journey or how I choose to carry it at the beginning. I didn't, it didn't feel like a choice. I, I was just, I was just fighting, you

Kara:

Mm-hmm.

Nikki:

fighting for my

Kara:

Mm-hmm.

Nikki:

fighting for survival and, and, and fighting for answers and treatments and all the things. and now, so there's and positive things about your character. That, you'll see affected, right? obviously the stress levels were are through the roof. They still are. and, you could quickly go down a road of despair. you could quickly, you know, live a life of with anxiety. And all of those are often just. Reactions that we have no control over, right? This is just our bodies minds, heart's way of, you know, reactions to the situation we're in. But I think now that I've been on this road a while, I can look and choose how I want to react to all this and what I wanna carry. With me. I don't wanna carry the stress around and the anxiety around though I though I do, I, I don't want that to be who I am and who I become. I don't want to become, a martyr. I don't wanna become. all about my son's rare disease. and so I'm choosing to look at the other parts of my character that it's cultivating. You know, I cultivated a lot of patience. That's something I did not have before it's cultivated a softness, in me and, which is so funny. Did you hear me talk about the fire and the fighter?

Kara:

Mm-hmm.

Nikki:

But the flip side of that it's cultivated a softness in me too. so I can, I can choose when to use one or the other. so I think now it's basically that I'm choosing what I allow this to, bring from me what I want to spring from you. When, when someone meets me, what do I want them to? Feel from me. What do I wanna radiate? And that is warmth and love. And that's, that's more important to me than anything. And so I think as time has gone on, just, it's become like there's a choice that's clear at some point, you know, of what you're gonna carry, how you're gonna carry it.

Kara:

Wow. I love the way that you were able to articulate that. The words that come to my mind as I hear kind of essentially, if we're gonna look at this before and after is like where you started was a victim of what happened, a victim of the diagnosis that you had no control over it. there's this martyr like I have to, it has been done to me. And then you've essentially evolved to be able to have, a vantage point of this thing happened. But I have a choice in how I engage with it and who I am in relationship to it, which is essentially, it's like you restored the power within you. So, like has this inner fighter, has been, kind of exponentially strengthened because it's doing it from this place of empowered choice, not from kind of a reactionary, I guess kind of like a, a victimized kind of place. So.

Nikki:

Yeah, I would say, I always felt. I mean, I never felt like a victim per se, but I did feel like it had the, possibility of bringing out me qualities that I didn't like.

Kara:

Mm-hmm.

Nikki:

like, yeah. anxious and, without hope and, grieving and, though I've been at, I've had all of those pieces at maybe at different points. it's not how I wanna live my life, right? That's not the overarching, end point. And so it's nice to see that where you can start doesn't have to where be where you stay.

Kara:

Mm-hmm.

Nikki:

and that, you know, you can see both right in front of you and then you can kind of choose,

Kara:

Yeah.

Nikki:

how you want this, you want this to affect you and what you, and how you wanna, live your life despite it.

Kara:

Yeah, exactly. Well, and that's one of the themes that your book highlights. So let's talk about your book a little bit. A lot actually. And so your book I think is, I think one of the major themes is this hopefulness, and I can't recall the word specifically. Do you recall how you describe your relationship to hope in the book? Do you remember?

Nikki:

Oh, there's a lot of hope stuff in there.

Kara:

I know, I was like, I feel like, well, without the words, I mean, obviously it's a major theme. So for the video people, it's called Rare Mamas Empowering Strategies for Navigating Your Child's Rare Disease. And it's a pretty meaty book. I mean, this is not like a, like a little 100 pager, like it is really full of goodness. And so I want to give you the opportunity and the platform to. To share about it. I'd love, you know, to have you share a little bit about the writing experience. What was that like for you as you took on this project?

Nikki:

the writing was, the writing piece of it I actually loved, which was so surprising to me because I never. Wanted to be a writer. I had never had some goal of

Kara:

Mm-hmm.

Nikki:

that was, I had a lot of goals and a lot of dreams and a lot of creative outlets to be honest, but writing was not one of them. So it really surprised me, that I enjoyed the process of writing so much. I think it really came from those, I wrote a lot when I was by myself in the early morning and I think before my kids woke up, and I think that. was very therapeutic. It was time to process a lot of my feelings. it helped me write a lot of my story on a, on a page, and so there was healing in that for sure. And, The thought for the book really came because when Miles was diagnosed, as I finally kind of, and I stumbled, I trials and errors, challenges, obstacles, I feel like I bumped up all against all of them. And I kept wondering why it wasn't easier.'cause I know other moms that had gone before me had, had done the same. And so why are we all having to kind of reinvent this wheel? And so I just started writing Wish, I wish, I know when Miles was diagnosed. I thought at some point maybe I could share that with the people around me, at the PT office and you know, others in my community that I met. And then, I then I had a hard time stopping writing it kind of

Kara:

huh.

Nikki:

I got to a point where I thought, I think that's all I have to say, than I didn't, I had more to say. And every learning. I put it in there every, everything that I wish I, you know, gosh, this took years to figure this out. I wish I would've known this, you know, at the beginning. Why someone, we need to know this at the beginning. I just kept writing and it, and, it kind of. Became this hopefully a guide, with strategies, that someone can use, tips, tools, I dunno how tos. And then my stories peppered all through there. Just to share this. You can hear that other, someone else has gone through a lot of these similar things, and what I learned from it, and I just wanted it to be a real source of strength and I wanted it to be a source of sisterhood so

Kara:

Mm-hmm.

Nikki:

When somebody read it, they felt that they could relate. And, all need examples of others, you know, going through it and how they handled it. I feel like other moms or the, and other parents are often the best. Sources of information, right?

Kara:

Mm-hmm. Mm-hmm.

Nikki:

obviously needed all the guidance of our, the talented specialists and researchers, but that peer-to-peer, you know, this is how, this is actually what helped me in the grind and the daily, like this is how to apply it in the day-to-day living. And this is what you're doing, Kira,

Kara:

Mm-hmm.

Nikki:

with serving, you know, your community and, and. So it's just that, yeah, that peer to peer, peer support that I feel is so important. So that's what I hope the book is. I hope it's a source of strength. I hope it's a source of support and sisterhood.

Kara:

Well, I would say I haven't gotten to read it, a page to page, but I've jumped around here and there and I feel like it is that beautiful compilation of, of your story, but also this deeper wisdom. And, you know, you bring your faith into the story as well, but also, don't exclude people that don't share your same faith and. I just feel like really it truly is like this very hopeful, hope-filled book. And I think what I wanna encourage, listeners is that it feels very helpful at any stage, so I could see it being so helpful. In the early stages, which is kind of where you wrote it for, but I feel like for someone like myself who's been at it a while, I feel like it is so valuable to look at other perspectives, to other stories, to help maybe notice where we've gotten stuck or where we might need more support or when, you know, maybe some of the strengths that you have, the inner fight in you that has accomplished, something specific that. Maybe we don't have that strength, and so we can kind of lean on your wisdom and vice versa and. I just feel like I wanna encourage people to pick it up. And yes, it's for people with rare disease, but I think it would be very applicable for anybody that, has a diagnosis that's impacting their life in ways that rare disease does and many other forms of disabilities do. So thank you for sharing it. And it comes out which day.

Nikki:

It comes out on September 23rd,

Kara:

Okay. September 23rd. And what do people need to do to purchase? Said book.

Nikki:

it on all the platforms, Amazon, Barnes and noble bookshop.org, anywhere, any various nd retailers anywhere you get your books, you'll find it.

Kara:

Okay.

Nikki:

yes. And thank you for sharing

Kara:

are pre-orders available?

Nikki:

No pre-orders.

Kara:

Okay.

Nikki:

you can, you can learn more, on my site at, you can

Kara:

Okay. And I did that successfully. Okay. So I did that because, I mean, I have a copy obviously, but I was like, I wanna know all the things you're doing, so I'm gonna do that. okay, that's gonna be great. So we can put that particular link on the show notes so that people can make sure that then they can be informed so they don't, it doesn't fall off their radars.'cause I know we got a lot, lot going on. And then of course we'll have the active links when, when sales become available on the 23rd. So, well, congratulations. There's just so much beauty, in what you have done and how you show up in the world, and I'm so thankful to know you.

Nikki:

Thank you. I'm so thankful to know you and I love what you're doing and thank you. These conversations fuel me so very much, and that's the whole point, just all of us talking and sharing our stories. This is how we do it.

Kara:

Exactly, and we'll see those of you listening on the next episode.