Latest / All Figured Out with Andrea Barr: Figuring Out Work, Life and Parenting / 123. What happens when you refuse to take "wait and see" for an answer - Nikki Holekamp

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123. What happens when you refuse to take "wait and see" for an answer - Nikki Holekamp · All Figured Out with Andrea Barr: Figuring Out Work, Life and Parenting

• 0:00
  Welcome back to the All figured Out podcast.
• 0:02
  I'm your host Andrea Barr. Thank you so much for joining me
• 0:05
  again this week. We have a beautiful episode
• 0:09
  today with Nikki, who is somebody I met on Instagram.
• 0:13
  I don't even remember how we met and it just her story and her
• 0:18
  writing really spoke to me. And I just reached out to her.
• 0:21
  I said you are a beautiful writer.
• 0:22
  I so appreciate the words that you share about your son's
• 0:25
  story, your story, and do you want to come on the podcast and
• 0:29
  just share about your life? And she said yes.
• 0:33
  So today we will be diving into the very inspirational journey
• 0:37
  that Nikki has gone through. She is an absolutely remarkable
• 0:40
  individual whose life is really a testament to resilience,
• 0:44
  creativity and advocacy. So the crazy thing is that
• 0:48
  Nikki, she'll explain the story, but she is actually a trained
• 0:51
  pediatric occupational therapist who then ended up needing those
• 0:57
  skills. And it's just so bizarre how
• 1:01
  life can happen. Like she just happens to be
• 1:03
  trained in this area where then she has her son.
• 1:05
  And those skills really came in handy.
• 1:08
  And she has completely now transformed her career into
• 1:12
  becoming a really passionate parent advocate and using her
• 1:15
  voice to create meaningful change not only for her family,
• 1:18
  but for others. Her journey began with her son
• 1:21
  Asher, who faces some medical complexities like I alluded to.
• 1:25
  And through this experience, Nikki really discovered the
• 1:28
  profound impact of storytelling and lived experiences.
• 1:32
  And she really did this through writing a lot of really
• 1:35
  beautiful writing that she has online, on Instagram, etcetera.
• 1:39
  Nick, you believes in the power of intuition and the importance
• 1:42
  of sharing your story with other people.
• 1:44
  And in this episode, she really reminds us that our voices and
• 1:47
  our experiences and sharing them really, really matter.
• 1:51
  And by sharing them, we can help other people who are navigating
• 1:54
  similar paths. And that's something that I
• 1:56
  really am passionate about doing on this platform, on this show
• 1:59
  is sharing a variety of different stories.
• 2:02
  Know that whoever is listening and if if it's one person who
• 2:06
  feels seen, heard and understood by somebody else's story, like
• 2:11
  that is just my motivation. And so whether any of this
• 2:15
  resonates with you and your life circumstance or you just take
• 2:18
  away from this episode that wow, yeah, writing is some medicine
• 2:22
  that I could really lean on or telling my story, whatever that
• 2:25
  part of your story might be, whether it's, you know,
• 2:28
  something crappy that happened last week or something in your
• 2:31
  childhood, that sharing our stories can just be such a
• 2:34
  powerful tool to connect with others.
• 2:36
  Nikki is wonderful. This is a really lighthearted
• 2:40
  and inspiring episode, so I hope you enjoy.
• 2:50
  This is all figured out. I'm Andrea Barr.
• 2:52
  I'm a career coach for parents, a mom of two, and I absolutely
• 2:56
  believe that you can continue to grow personally and
• 2:59
  professionally while protecting family time.
• 3:04
  We're about to figure out this. Work, life and parenting.
• 3:06
  Stuff out together. Nikki Holkham, thank you so much
• 3:17
  for joining me on the all figured out podcast.
• 3:20
  No thanks for having me. It's such a fun excited.
• 3:23
  To be here. Well, I'm excited.
• 3:25
  I met you online. I think it was on Instagram and
• 3:28
  I think I reached out and said you have such beautiful writing.
• 3:33
  I mean, probably your penmanship, but what I meant was
• 3:35
  the words that you write that I saw online.
• 3:38
  I think that's how we met. That's right.
• 3:41
  That's what I meant. Yeah.
• 3:42
  You, you sent me a message and said I love your writing and
• 3:44
  let's, let's talk. And I, I felt so honored.
• 3:48
  Yeah, Well, I'm so excited to just tell your story yet to tell
• 3:51
  a story quite like yours on the show that is going to be really
• 3:56
  weaving through life, life as a professional into motherhood,
• 4:01
  parenthood, into life with children who have different
• 4:06
  needs than perhaps your typical, your typical child or average
• 4:10
  quote, UN quote. And so I'm so excited to just
• 4:13
  bring that conversation. You just seem so open as well.
• 4:15
  And so I know when I mess up something, you're gonna let me
• 4:19
  know. And we're gonna just tell this
• 4:21
  beautiful story together and inspire those who might be going
• 4:24
  through their own stuff, as we all do in different forms.
• 4:28
  Yeah, so take me back to, I mean, I always say I'd love to
• 4:33
  go back to your childhood, but we don't quite have time for
• 4:35
  that. What was life like before
• 4:38
  children? What were you up to?
• 4:40
  Yeah, I was born and raised in Vancouver Island and I went to
• 4:44
  university in Victoria and then grad school in Alberta and my
• 4:49
  husband's friend the Island as well.
• 4:51
  And we just spent a lot of time living here, and we spent many
• 4:55
  years living in Tofino and traveling, and then we settled
• 4:59
  in back home in the Comox Valley right before we had kids.
• 5:03
  Dreamy, dreamy. And what was your grad program
• 5:08
  in? My I have a masters in
• 5:10
  occupational therapy and I specialize in Pediatrics.
• 5:14
  So you were like, I've got this, I've got.
• 5:18
  This I've got this. Right.
• 5:20
  Yeah. What was that like going?
• 5:21
  So being like, OK, I don't know how you know how you just
• 5:25
  conceived your children, but you know where you're like, OK,
• 5:28
  let's do this. Like I feel confident compare
• 5:31
  your apparent, what was your mindset going in?
• 5:33
  Yeah, it's funny cause like up until I had kids, I was like,
• 5:36
  oh, I kind of feel like a fraud. Like I'm giving all this advice
• 5:40
  on parenting tips and therapy strategies, but like, I don't
• 5:45
  have any lived experience. And then, you know, Fast
• 5:48
  forward, I had my daughter and then I had my son.
• 5:51
  And it was really like flipping the script where I suddenly was
• 5:55
  living in the world that I was working in and my my 2 worlds
• 6:00
  kind of got like meshed together this one.
• 6:02
  I can't. I can't even imagine.
• 6:04
  That's just so I don't want to say unfair or just weird when
• 6:10
  life does things like that. Yeah.
• 6:11
  How did you feel? What?
• 6:12
  What word would you describe? I, you know, I felt in a way
• 6:18
  that I was like really well equipped to handle the situation
• 6:21
  that I found myself in when he was born four years ago.
• 6:25
  And then on the other side of it, I felt it was really,
• 6:28
  really, really hard for me to go back to work after that because
• 6:31
  I, I felt like suddenly my 2 worlds collided and, and I had
• 6:35
  been working in this field and then suddenly I was living it in
• 6:39
  my everyday and I found I didn't have quite the capacity to do it
• 6:44
  at work when I was dealing with it full time at home anymore.
• 6:47
  Yes, holy smoke. So you're an occupational
• 6:51
  therapist specializing in Pediatrics.
• 6:53
  You have your daughter Scotty seven years ago.
• 6:55
  We have to call that out because my husband's name is Scotty and
• 6:58
  him and I both agree that is the cutest girls name ever.
• 7:01
  So you had your daughter seven years ago and you're I'm sure
• 7:05
  you're like OK parent. Like I guess what was that
• 7:07
  parenting with those those first like single, you know, you have
• 7:10
  one child those first three years having Scottie, what was
• 7:13
  that like? It was just, you know, like full
• 7:16
  of bliss and all the newborn things and all the firsts and
• 7:19
  all the milestones and like so much excitement and then yeah.
• 7:23
  And then having to in and of itself is is trickier to
• 7:27
  navigate anyways. And but yeah, no, the first few
• 7:32
  years with just Scotty, where were they were a breeze.
• 7:36
  They were so fun and we traveled and did all the things.
• 7:41
  Yeah. And did you go back to work
• 7:43
  after you had your? Daughter, I went back to work.
• 7:46
  I went back to work and we started building a house when I
• 7:49
  was pregnant with my second and we moved in about a month before
• 7:54
  he was born. So we were like busy.
• 7:57
  But we have lots of family support in town.
• 7:59
  So I did go back to work part time and yeah, it was good.
• 8:03
  It was a good balance. At that point, before you even
• 8:05
  had Asher, whose story we will be talking about at that in
• 8:08
  depth, you find it. I've never actually asked this
• 8:12
  question, but did you find it challenging to be a mum outside
• 8:15
  of work and then go to work and also be working with children?
• 8:19
  I did, but not in the same capacity until I had out.
• 8:23
  After I had Azure I found like I had a bit more insight and I
• 8:28
  felt actually a bit more confident at work after having a
• 8:31
  kid of my own. I've found it could be a bit
• 8:34
  more relatable. But yeah, I wouldn't say it was
• 8:38
  harder until until after I had Asher.
• 8:41
  I'm only laughing at the like that's giving the advice that's
• 8:44
  come up a couple quite a few times actually on this podcast.
• 8:46
  If like all of us just laughing at the stuff that we used to say
• 8:49
  before we were parents or like the advice you're trying to give
• 8:52
  her, the judgments you're passing or one of my always
• 8:55
  bring up my girlfriend Gas, who's a family doctor and she's
• 8:57
  like, I just woof, like what was I saying to these parents?
• 9:03
  She's like, medically it was fine, but like that's not OK.
• 9:07
  How I was reacting to their the woes of their their child ring
• 9:12
  OK, so tell me about you know the extent that you want to get
• 9:17
  into. I want to hear, you know,
• 9:19
  pregnancy with Asher birth days, whatever you want to share about
• 9:24
  that whole experience that feels meaningful to you and this story
• 9:27
  take. It away yeah.
• 9:29
  So I Scotty actually I had to have her early because they were
• 9:34
  worried that she had growth restriction.
• 9:36
  I'm a small person. My husband's shorter In the end,
• 9:40
  she was completely fine. But because of that, they wanted
• 9:44
  monitor my second pregnancy closer.
• 9:46
  And so probably at 28 weeks, they gave me a extra ultrasound.
• 9:51
  And I like remember the exact moment that the midwives called
• 9:55
  me I was like, my house was 3/4 built.
• 9:59
  I was my husband was awake fishing for two months and I was
• 10:04
  like sitting under the porch in the dirt.
• 10:07
  We didn't have any patio yet and they called me and they said,
• 10:12
  you know, we the ultrasound tech thing this club beat and we need
• 10:16
  you to go to the city for our specialist appointment.
• 10:19
  And like I had no idea what clubs but was and I just
• 10:24
  remember hanging up the phone and like my dad was there and I
• 10:27
  just sobbed and sobbed and sobbed.
• 10:29
  I was just like beside myself and she was like, you know, 99%
• 10:35
  of the time the ultrasound techs are wrong.
• 10:36
  So like it's not going to be a big deal.
• 10:38
  Go to the appointment. They went to the point where my
• 10:41
  mom and Victoria and at this. Point wishing.
• 10:45
  My husband was gone. Yeah, he commercial fishes for
• 10:48
  all of May and June. OK, He.
• 10:50
  Was away. I'm gonna be honest, I thought
• 10:51
  he was like on a fun boys trip for two months.
• 10:53
  I was like, whoa. Oh.
• 10:55
  No, he was working, getting out all of his fun before.
• 11:04
  Or two sorry we shouldn't laugh, could forgive that's.
• 11:10
  OK, imagine I let him do that. Great.
• 11:14
  OK, so it would work. OK, this is important.
• 11:16
  So he's doing that. OK, you're out the point with
• 11:18
  your mom. Yeah, and the specialist
• 11:21
  confirmed, yes, your baby has clumpy and you know, you can do
• 11:25
  genetic testing, but you're pretty far along.
• 11:27
  And and just like after that, I obviously did some research.
• 11:33
  I talked to the orthopedic doctor, had a consult with him
• 11:36
  and he was like, it's no big deal.
• 11:37
  But around the same time I started having super strange
• 11:40
  symptoms, like sitting down on my computer to work.
• 11:42
  I would like almost pass out. And what I learned later is that
• 11:48
  Ashley was born with a more complex condition than just club
• 11:51
  feet, and none of the muscles in his legs developed properly.
• 11:54
  So he was stuck on the right side of my body.
• 11:58
  And every time I would sit down, I would press on him like one of
• 12:01
  my nerves that would carry the blood back up.
• 12:03
  And so I would essentially feel like I was going to faint every
• 12:06
  time I sat down at a certain position.
• 12:09
  But he was stuck, and he couldn't move.
• 12:11
  And, you know, I think inherently, like when they told
• 12:16
  me about first appointment or even when they called me and
• 12:20
  they were like, it's probably not true.
• 12:22
  I was like, I, I know that this is different.
• 12:25
  Like I, I can feel it inside. That's something is different.
• 12:29
  And you know, I think you just know those things as a mom and,
• 12:34
  you know, it was spring and summer and I went through the
• 12:39
  whole summer just like kind of living in this limbo of like so
• 12:44
  much stress and really trying to soak in the moments with my
• 12:47
  daughter and summer. And then they were like, we're
• 12:50
  going to induce you at 37 weeks. And they didn't in the end.
• 12:53
  And they had to go in for a stress test like every single
• 12:56
  three days and in the end became full term.
• 13:01
  And he did get induced, but yeah, it was stressful.
• 13:06
  He was born and and we were short staffed.
• 13:09
  There was no pediatrician available.
• 13:12
  And he came out and he just like, looked like a baby Buddha.
• 13:16
  His legs were just all folded up, squished together, like
• 13:20
  literally immovable. And I remember the doctor that
• 13:23
  delivered him or that was like covering for PEDs was like, you
• 13:27
  know, he's healthy, but I have absolutely no idea what's wrong
• 13:31
  with his legs. And you're going to have to go
• 13:34
  find a specialist like ASAP. And they just kind of like sent
• 13:38
  us on our way. They didn't have any follow up
• 13:41
  and. Sent you on the way home.
• 13:45
  Just sent us home. Are you kidding me?
• 13:50
  Yeah, And I just like thinking back on it, I was just in so
• 13:53
  much shock that I didn't really like know to ask for something
• 13:58
  different. But of course, he came home and
• 14:01
  at four days old, we went to Victoria to see the orthopedic
• 14:04
  doctor. And I imagined that we were
• 14:07
  going to spend the whole day there and have like ultrasounds
• 14:09
  and MRI and X-rays and all the things.
• 14:13
  And he just like one of the most traumatic moments of my life.
• 14:18
  But he just, like, ripped his legs straight open and, like,
• 14:20
  put him in a cast because that's how you treat club feet.
• 14:23
  You cast them like braces. You know, you're slowly trying
• 14:27
  to change the position of the feet, but it was just so painful
• 14:32
  for him. And we came to learn after four
• 14:34
  weeks of doing this and me being like, this is not right.
• 14:38
  The other babies aren't screaming this way like this is
• 14:42
  like I we need more exploration. I want an X-ray and he broke his
• 14:49
  femur during delivery and the orthopedic doctor didn't know
• 14:52
  it, didn't pick up on it for four weeks.
• 14:56
  And I was just like beside myself when when I found that
• 15:02
  out. And I was like, he he said to
• 15:04
  me, I wouldn't have done anything different if we knew it
• 15:05
  was broken. And I was like, I would have I
• 15:08
  would have changed his diaper differently.
• 15:09
  I would have held him differently.
• 15:10
  I would have never let anyone else hold him.
• 15:13
  Like, I just thought he was in pain because he was in light
• 15:17
  cast. But he yeah, the X-ray was.
• 15:21
  So when we finally got an X-ray like I was just yeah, I still
• 15:27
  thinking back to it makes me kind of sick.
• 15:29
  But we finished up service with that doctor and then we, I just
• 15:36
  like knew I was like a bit, you know, he didn't, he didn't
• 15:39
  correct his feet properly. This is like so much more
• 15:41
  complicated than it's being made out to be.
• 15:43
  And I just, I think and like looking back on it, I just, I
• 15:48
  felt so gas lit and I would talk to her physiotherapist and she
• 15:52
  eventually did explain to the doctor, you know, this mom is
• 15:56
  she has medical knowledge. She works in the field.
• 15:59
  So I think you can be more upfront with her because I kept
• 16:02
  asking every week like, what is this?
• 16:04
  What's wrong? Like this is not normal.
• 16:07
  This is not typical club feet. And he was like, oh, we're just
• 16:10
  going to wait and see. We're just going to wait and
• 16:12
  see. We'll see what happens.
• 16:14
  And yeah, don't let anyone ever don't, don't take that
• 16:18
  improvement. Don't take that advice from
• 16:20
  anyone. Do not wait and see.
• 16:22
  Because if we had waited, you know, I don't even know.
• 16:25
  But we ended up getting a second opinion in Vancouver and my
• 16:29
  husband was adamantly against it.
• 16:31
  But I, I emailed like heaters was like, why?
• 16:36
  Like, I think it's fine. And I was like, yeah, yeah, it's
• 16:38
  not fine. And I found this doctor and I
• 16:42
  tracked down his e-mail address, and I sent him a photo of
• 16:45
  Ashley's feet, like, they were corrected.
• 16:49
  And I was like, they're absolutely not corrected.
• 16:51
  And by this point, I hope I've been on Facebook groups and like
• 16:54
  all these mom forums and the doctor, I'll never forget this
• 16:59
  moment either, walking my daughter down to the beach.
• 17:01
  She went to nature preschool. And I was like, walking her down
• 17:04
  in the rain and November. And I got a call from the doctor
• 17:07
  and he was like, come here. When can you come tomorrow?
• 17:11
  Like get here. Pumps.
• 17:15
  Yeah. And he like that one moment
• 17:19
  changed the trajectory of Azura's life and like, I think
• 17:23
  all of our lives because we drove to Vancouver the next day
• 17:28
  and he spent like our original orthopedic doctor that whole day
• 17:32
  that I had visioned out in my mind.
• 17:34
  He made me spent 10 minutes with us, like Max.
• 17:38
  And then we went to see the other doctor and he spent two
• 17:40
  hours with us. And he was like, you know,
• 17:43
  people wait to see me, but I don't let parents in the room
• 17:46
  until they feel confident that they have had their questions
• 17:49
  answered. And he was the first person that
• 17:52
  was so honest with us. You know, he was like this.
• 17:58
  He was in his 80s. He was like, considered the
• 18:01
  leading club, that doctor in Canada, like, so renowned.
• 18:05
  And he was like, this is too far out of my scope.
• 18:08
  Like, I've never seen this before.
• 18:10
  You need to find someone who has.
• 18:14
  He's like, I don't know where they are.
• 18:16
  Like find them and get their opinion, hmm.
• 18:20
  Wow, What was your how did you react to that statement?
• 18:27
  That's a big statement to hear as well that like the leading
• 18:30
  podiatrist orthopedic surgeon in Canada is like, this is out of
• 18:35
  my scope. How did that feel?
• 18:37
  Yeah, I mean, scary because you want you want someone that's
• 18:41
  like, I got this. But then at the same time, like
• 18:44
  so refreshing because he was honest and like so humble and he
• 18:52
  truly like he had nothing to prove.
• 18:55
  He just wanted the best outcome for my son.
• 18:59
  And he was willing to learn and and, you know, he recollected
• 19:04
  his feet. He got them as good as he could
• 19:06
  get. But he was like, this is much
• 19:08
  far surpasses what I've ever dealt with before.
• 19:12
  And so with clubfoot casting, they cast your feet correctly,
• 19:16
  like slowly, but they also cast your knees to 90 because that's
• 19:20
  how it holds the cast. So like in a bend.
• 19:23
  So they had God Asher's legs to 90°, but you couldn't like they
• 19:27
  would not straighten. So there was no chance of him
• 19:30
  being able to stand. And yeah, we found it.
• 19:35
  I found a team like an orthopedic doctor, special
• 19:40
  physiotherapist in Florida. And we did an online consult
• 19:43
  with them and they were like, you know, we have pioneered a
• 19:47
  surgery to deal with this. But but try this method 1st and
• 19:51
  like, we'll send a video to your doctor.
• 19:54
  And so I didn't went back to him and I was like, hey, you know,
• 19:59
  they say to try and cast his leg straight.
• 20:01
  And he was like, whoa, I've never done that.
• 20:03
  Before, but like, let's give it a try.
• 20:06
  He actually was like, I, I legitimately didn't think that
• 20:09
  would work. And I'm so happy that it did
• 20:12
  because it it fully did. It strained knees out to
• 20:16
  straight. And at the same time, we had
• 20:19
  finally gotten into see neurology because in the end,
• 20:23
  Asher has a neurological condition.
• 20:25
  And we also told our neurologist that we were going to straighten
• 20:28
  his knees in casts. And she was so mad that we got a
• 20:32
  second opinion and just furious that we were going to go against
• 20:38
  her advice that, you know, we never have had a good
• 20:41
  relationship with her. And so, you know, we've come up
• 20:45
  across so many doctors and even our first doctor, you know, we
• 20:50
  had to tell him that we got a second opinion and that we
• 20:52
  weren't going to stick with him. And he was so he, I was scared.
• 20:57
  I've never like had any kind of anxiety, but I, we, we had an
• 21:01
  appointment with him and we had to walk into his office and
• 21:04
  Asher was in cast from her, from the new Doctor.
• 21:07
  So I was like, well, we have to tell him because he's going to
• 21:10
  be like, where did he get those cats?
• 21:12
  Whose cats? Are those?
• 21:15
  Oh my. Gosh.
• 21:17
  But he was good. And, you know, he's remained
• 21:20
  good. Like, I think he recognized that
• 21:23
  he didn't have the expertise to deal with it either.
• 21:24
  And he's helped us like, I've never let him work on Azure
• 21:29
  again. But he's helped us navigate, you
• 21:31
  know, dealing with doctors in the US and being a person on the
• 21:35
  ground to follow up. Because yeah, ultimately we we
• 21:37
  have left the country multiple times for care to seek the right
• 21:42
  treatment. And I'd love to hear more about
• 21:45
  that. What is, I mean, there's a whole
• 21:48
  financial discussion that goes with that, but how has it been
• 21:53
  to navigate to basically Mars and Venus, right?
• 21:57
  Like even though we're side-by-side countries, we've
• 21:59
  got a bit of attention right now, But you know, it really
• 22:03
  should be easier, but I imagine it's not.
• 22:05
  What does that experience been like?
• 22:06
  And have you gotten, is it just because by virtue of having more
• 22:09
  people in this country, potentially possibly more
• 22:12
  specialists like you, have you found some of the people that
• 22:15
  really do have the special specialization that you've
• 22:17
  needed? Yeah, we have.
• 22:19
  We actually found a kid that is 3 years older than Asher and
• 22:23
  like when you put their with the same diagnosis and you put their
• 22:27
  photos side by side as maybe like they look like twins, their
• 22:30
  legs are the exact same shape. It's wild.
• 22:32
  And um, yeah, so we have talked to that mom extensively and we
• 22:39
  found out where they went. And so his diagnosis one in
• 22:43
  1,000,000 people had it like it's so rare.
• 22:46
  And no one they've yeah, Azure. So they've never no, no one at
• 22:50
  BC Children's Hospital has ever had this diagnosis before.
• 22:55
  And there's a research team in the states that is researching
• 22:59
  and like working on a treatment, but they have a document and
• 23:03
  they're like, look into these things.
• 23:04
  So I was like, OK, you know, let's look into these things and
• 23:08
  had to fight like tooth and nail against, I mean, members of our
• 23:14
  team because they just didn't, they didn't agree, You know, I
• 23:18
  was like, we need an MRI. It's urgent.
• 23:20
  He could have this spinal cord thing.
• 23:21
  And they were like, no, it's not urgent.
• 23:24
  And anyways, we did get it. We did get an MRI because I
• 23:27
  called every single day for like 3 weeks.
• 23:31
  But the, the wild part of the story is that that referral went
• 23:35
  in, you know, January 2022. I got a call like, I don't know,
• 23:42
  they never took it out of the system because we ended up
• 23:45
  getting one, but through a different route.
• 23:49
  But I got a call this summer about it.
• 23:51
  I was like, it's been three years.
• 23:54
  Like that's how long it would have taken for us with a six
• 23:58
  month old baby to get an MRI. I was just like condition.
• 24:01
  That nobody's ever seen before. I don't understand why you'd
• 24:04
  have to be fighting an MRI. Why wouldn't they?
• 24:06
  That day he was born. Hmm, yeah.
• 24:09
  Going back like the day he was born, I feel like they should
• 24:13
  have sent him to Children's Hospital, like for a full workup
• 24:15
  or something. But so, yeah, back to the
• 24:18
  medical systems, like we got those at this point.
• 24:22
  I had, I, we had, you know, consulted with that doctor in
• 24:25
  the US and he had seen kids with this before.
• 24:29
  And so he also was like, you need an MRI.
• 24:32
  And when you get your MRI, send me the results.
• 24:35
  And so we got an MRI in July and we didn't hear anything from our
• 24:39
  team for like 6 weeks. And I, in that amount of time,
• 24:43
  had taken the MRI's and mailed them to the states, like mailed
• 24:47
  them to that doctor, mailed them to another specialist.
• 24:50
  And we'd had consults with three other doctors before we heard
• 24:53
  back from our doctors. And ultimately, they wouldn't
• 24:59
  let us see neurosurgery at BBC Children's.
• 25:01
  I put a post out on social media being like, anyone know of
• 25:04
  pediatric neurosurgeon? And eventually someone was like,
• 25:07
  yeah, I do. And they called the, you know,
• 25:09
  wonderfully, like, power of the Internet.
• 25:12
  They called me and like because they won't say who it was but.
• 25:18
  Are you kidding me? That's amazing.
• 25:21
  Yeah. That by the time we got in to
• 25:25
  see someone at Children's, like through our own accord, and we
• 25:30
  had already booked something in the US because they were like,
• 25:32
  we can, we can operate in six weeks.
• 25:35
  So we took him to Florida when he was 14 months old and he had
• 25:39
  a, a condition called a tethered spinal cord where like the
• 25:43
  nerves low down in his spine were tangled.
• 25:46
  So the signal wasn't getting through to his muscles in his
• 25:51
  legs. So like no signal is getting
• 25:55
  through. He's presented just like a
• 25:57
  paraplegic essentially. And the moment they, you know,
• 26:02
  he had that surgery was really scary that he crawled like 20
• 26:08
  feet across the room 2 days later.
• 26:12
  Nikki yeah. No How did it?
• 26:16
  Was just like that's like he's a genius baby how do you learn to
• 26:19
  crawl that fast anyways, that's cool he.
• 26:22
  Was over a year old and he had been working on crawling with
• 26:25
  our physiotherapist 3 * a week for like 9 months but just never
• 26:29
  had any capacity to do it because he couldn't move his
• 26:32
  muscles on his own. And yeah, literally like 2 days
• 26:37
  after he, he spent the day in the hospital and then he came
• 26:40
  back to where we were staying and I was like, yeah, just crawl
• 26:43
  across the room to my daughter. And I was like, you know, like
• 26:48
  you, you as a parent, you hope you're making the right
• 26:51
  decisions. You have no idea.
• 26:53
  And you can't know ahead of time.
• 26:55
  But like in that moment, I just was so grateful for my intuition
• 27:02
  to like push harder and find other people and not just wait
• 27:08
  or take no for an answer because it like made all the difference
• 27:11
  for him. Let's.
• 27:12
  Talk more about that. That is such an important topic
• 27:15
  in parenthood, in life, I would say, but particularly in a
• 27:19
  situation like this where you're kind of met against your,
• 27:23
  there's no playbook for life, right?
• 27:25
  And we're constantly like asking chapatti, asking friends.
• 27:29
  But at the end of the day, I, I believe all you have is you
• 27:34
  know, your own lived experience and your intuition.
• 27:36
  That's all you can really go on. And so how when you were meeting
• 27:40
  doctors and probably still are, or physicians, practitioners,
• 27:43
  whomever, who are vehemently against something that you're
• 27:48
  like, I really believe this is the right course of action.
• 27:51
  Like you're talking about that neurologist you've had a tricky
• 27:53
  relationship with. Sure, they're great at what they
• 27:55
  do, but like, I don't know if you can even say that actually.
• 27:58
  Now I'm on my soapbox for a second, but like, can you say
• 28:01
  that they're really great at what they do if they're not open
• 28:05
  enough to see that there might be other ways of doing things?
• 28:12
  You know, I think like, you know, I respect all physicians
• 28:18
  and care providers. I know that they put like so
• 28:20
  much time and energy and compassion and care into what
• 28:24
  they do. Like they wouldn't be a doctor
• 28:27
  if they didn't believe that. And at the same time, I think
• 28:33
  there is a big disconnect between, you know, recognizing
• 28:38
  when you don't know something. And there's a big difference
• 28:41
  between doctors who are open to other opinions and ones that
• 28:46
  aren't. And I think it's, you know,
• 28:48
  maybe like a certain amount of time and practice, certain
• 28:52
  experience and practice, like, you know, you could be dealing
• 28:55
  with a population, like one population exclusively, and you
• 28:59
  feel really confident in that area.
• 29:01
  But then I was like, this is a different situation.
• 29:04
  Like you, you know, we got we got put in this category because
• 29:08
  it's the closest one to us, but it it doesn't capture the whole
• 29:13
  picture. And so you have to be willing to
• 29:16
  critically think in this, in this situation.
• 29:19
  And I think ego gets in the way. Like I think meeting us for the
• 29:23
  first time and me being like, no, I disagree.
• 29:26
  And we're going to do this. Like, I mean, that would
• 29:28
  probably be hard to hear and it probably doesn't happen very
• 29:31
  often, right? Like I never felt like I could
• 29:36
  question a doctor up until this moment.
• 29:39
  And now I would never not get a second opinion like ever in in
• 29:43
  anything because everyone's opinion is different.
• 29:47
  No matter how closely you are in terms of like your scope of
• 29:52
  practice or what you believe in or your research area like at
• 29:56
  the end of the day, we all think a little bit differently.
• 29:59
  So no two people are ever going to have the exact opinion.
• 30:04
  And I think that was like such a big lesson of like, you know,
• 30:09
  it's you. It's OK to get a second opinion
• 30:12
  and it's OK to disagree with someone because at the end of
• 30:16
  the day, you go into that office for 10 minutes, an hour or
• 30:19
  whatever, you leave and and they forget about you because they
• 30:24
  have another patient waiting and they're really worried about
• 30:27
  life or death. Like our medical system is so
• 30:29
  reactive. They're like, is this, is this
• 30:32
  an, an immediate life or death concern?
• 30:35
  No, OK, moving on. Whereas you go home and you're
• 30:38
  living with that. Like whatever the diagnosis is,
• 30:41
  whatever the situation is, you're living it.
• 30:43
  So, you know, people need to give them helps the permission
• 30:47
  to stand up for what they want, because you're at the end of the
• 30:52
  day like you're the one going home with it, not them.
• 30:56
  So practically speaking, how does one go about, I know you'll
• 31:00
  speak to your experience in Canada, how does one go about
• 31:03
  getting a second opinion? I know that seems like such a
• 31:05
  basic question maybe to you now, but back then it's a weird, it
• 31:10
  is a weird thing. We've done it with my husband's
• 31:11
  health stuff, and it's not necessarily straightforward.
• 31:15
  But from your experience, how did you end up going about doing
• 31:17
  that? Yeah.
• 31:18
  You're right, it's not straightforward.
• 31:20
  And like I have never been able to get a second opinion from
• 31:23
  another neurologist because either isn't 1.
• 31:27
  There's no other neuromuscular specialist in the province.
• 31:29
  But, you know, and it's tricky because we've asked our
• 31:34
  pediatrician for referrals certain places and he's like,
• 31:36
  well, I can't overstep that doctor.
• 31:39
  Like there's like a hierarchy that exists, I think, you know,
• 31:42
  within the system. But you know, thank goodness, my
• 31:46
  family doctor, she has just been our savior.
• 31:48
  And so I would say finding someone on your team, whichever,
• 31:53
  wherever it is, like specialist GP, just someone that really
• 31:58
  understands your story and your position and your situation
• 32:01
  because she has been like, where do you want?
• 32:03
  I'm like, I want a referral to a doctor in Toronto and she's
• 32:06
  like, alright, like, so you need someone that's going to put a,
• 32:11
  another referral in for you. Or in the instance of our first
• 32:15
  second opinion, I just found the doctor's e-mail address, which I
• 32:18
  don't think that probably works all the time, but he responded
• 32:23
  to me. Or, you know, I think if you
• 32:25
  have someone you really wanna see, like call their office and
• 32:28
  ask what you need to do to get an appointment with that doctor.
• 32:33
  But ultimately, you need to find someone that is willing to like,
• 32:37
  you know, not step outside the lines, but just like, not follow
• 32:42
  the exact rules and just be like, sure, you want to talk to
• 32:46
  someone else. Like, let's get you into talk to
• 32:47
  someone else. And it's tricky because there's
• 32:50
  wait lists for everything. And so I think some doctors
• 32:53
  really are like, you're wasting my time if if you're just going
• 32:56
  to get a second opinion. But I still think that's your
• 32:58
  right to do. I think there's something.
• 33:01
  This is not the right word sexy about a human being who is
• 33:06
  willing and open. And the confidence I was, I'm
• 33:10
  used the word sexy because there's this like confidence in
• 33:12
  a human being to be like, yes, like I'm so open and willing for
• 33:18
  you to go explore your options so that if and when you come
• 33:22
  back to me, it's a hell yeah. And this is such a trend example
• 33:25
  that in my coaching work, I meet with people all the time who are
• 33:28
  like, OK, I'm looking for career coach.
• 33:30
  Like, are you the right person for me?
• 33:32
  And there are so many times where I'm like, you don't seem
• 33:36
  necessarily convinced or whatever, you seem like you need
• 33:38
  more information. So let me answer those questions
• 33:41
  for you or let me give you a couple other options.
• 33:43
  Or there's definitely times where I'm like, Hey, I'm not the
• 33:46
  person for you. I can't live on exactly what you
• 33:48
  need, say some technical recruiting thing or whatever.
• 33:52
  But I'm like, I, I want, I strive to be that person because
• 33:55
  there's, there's just this like beautiful confidence.
• 33:58
  And it's such an attractive quality in a human being who can
• 34:02
  have that confidence to say, like you were saying before, you
• 34:05
  know what? I I've not really worked in this
• 34:08
  particular instance. And I wonder if there's someone
• 34:10
  else out there who can. It's just, it's bizarre to me
• 34:13
  that like adults, you know, we look at some of these, say,
• 34:17
  practitioners who were supposed to be adults, you know, fifties,
• 34:20
  60s or whatever. And you're like, you can't put
• 34:23
  your ego aside in that way and be like, let me phone a friend.
• 34:26
  You went to medical school with all these colleagues.
• 34:28
  Like what? My husband had some beautiful
• 34:31
  situations of that where both situations happen where we had
• 34:33
  terrible, not terrible, but people we really didn't jive
• 34:37
  with. And then there was other doctors
• 34:39
  who were like, I'm going to call my friend who's in Texas because
• 34:43
  this situation with your heart is like a bit complicated.
• 34:46
  And this particular situation I've never seen.
• 34:48
  And so let me call my friend in Texas.
• 34:50
  We're gonna collaborate on this. And he would on his own time, on
• 34:54
  his own accord on his personal cell phone.
• 34:55
  He called his dude from medical school.
• 34:57
  And this is an 80 year old physician.
• 34:58
  And I'm just like, that is so, ah, attractive.
• 35:02
  In a human being, we had the same thing and I think, you
• 35:06
  know, similar age thing. And I wonder if you get to a
• 35:09
  point of your career where you're just like, you're not
• 35:11
  trying to prove yourself anymore and you're just like, I, I, you
• 35:15
  know, this is outside my capacity, but let's figure it
• 35:18
  out. Like there is someone out there
• 35:20
  that's going to know. And because you can't absolutely
• 35:24
  know everything, Medical Sciences are advancing at a
• 35:27
  rapid pace and there's innovation happening all over
• 35:30
  the world and we have access to it.
• 35:32
  So we should we should do that. And you're, you're right.
• 35:36
  Like coming back to someone with the confidence of like, yes,
• 35:40
  this is it. That like that feels good.
• 35:43
  And that feels that, yeah, that just feels grounded.
• 35:47
  And like, that's how we were when we went to Florida.
• 35:50
  I was like, this is the like, if we're going to go and we're
• 35:53
  going to pay. And this is this is the place we
• 35:56
  want to be. Like this is the top place.
• 35:58
  And like, I feel sure of that. And that's what you want going
• 36:02
  into any kind of surgical medical condition for sure.
• 36:07
  It's so true. And who knows, I mean, maybe at
• 36:09
  the time Asher couldn't comprehend what was going on as
• 36:12
  much or couldn't verbalize back to you, but like he could feel
• 36:15
  the vibe of you guys being, I imagine excited and confident.
• 36:19
  And so he's going into that surgery and I totally believe in
• 36:21
  this in the psyche of going into a surgery or procedure or
• 36:25
  anything and like that. I think that really affects your
• 36:28
  outcome. And it's like he could probably
• 36:30
  sense because we're like, we have so much trust in these
• 36:32
  people. Like you're going to be in great
• 36:34
  hands versus the reverse going to some of those people you're
• 36:36
  working with where you're like, he could probably sense that
• 36:38
  like you were like getting the ick from some of these people.
• 36:43
  Yeah, well, he like not as serious, but he ended up he's
• 36:46
  had like 6 surgeries like all pretty minor, but he had a foot
• 36:51
  surgery last winter that was that was was quite extensive.
• 36:55
  And you know, someone here recommended it to us and some we
• 37:01
  hadn't seen a ton. And I was like, I'm going to get
• 37:03
  another opinion. And we had seen a foot doctor
• 37:07
  when we were in Florida, first spine.
• 37:08
  And then we've seen another specialist.
• 37:11
  We traveled to the States when he was like 10 months old to see
• 37:13
  the specialist. And so we got both their
• 37:15
  opinions and they were all different.
• 37:17
  Every single one of them was completely different.
• 37:19
  And we just, you know, we made the choice to go back down there
• 37:25
  because I was like, well, they were much more aligned in their
• 37:29
  opinions. And one of them was kind of in
• 37:32
  the middle. And also exactly like, I just
• 37:35
  have trust in the system. Whereas like I had friends that
• 37:38
  were taking their kids for surgeries here and they were
• 37:41
  getting cancelled because we didn't have enough staffing.
• 37:43
  And I was like, I'm not going to cast your legs for four weeks
• 37:47
  just to have your surgery be cancelled maybe.
• 37:49
  And same like have someone operate on you that's never
• 37:54
  operated on this condition for whereas these people have.
• 37:57
  So like, you know, there's a short term cost to it, but the
• 38:01
  long term benefit just is so much more substantial that for
• 38:07
  us, we were like, we, it's not a, it's not a choice like we
• 38:12
  have to, we just have to have the right care.
• 38:14
  And I think we're at a point where we don't need a lot of
• 38:18
  intervention at the moment, and we can consult with them and
• 38:21
  talk to people here and have a bit of both worlds.
• 38:25
  But yeah, like they're exactly like your situation with the
• 38:28
  doctor in Texas. There's people out there that
• 38:30
  that specialize in very rare things.
• 38:33
  And in those situations like you need to find the people that
• 38:37
  have those answers you're. So, right, what does life with
• 38:40
  Asher and of course your whole family, with Scotty, your
• 38:44
  husband, what does life look like now with given his
• 38:46
  condition? Where are you at?
• 38:48
  Yeah. He, he is just like such a
• 38:52
  little resilient, charismatic person.
• 38:56
  He's four and he primarily gets around using wheelchair.
• 39:01
  Up until like a couple months ago, he's just crawled.
• 39:03
  Like he's had no interest in using a Walker or using his
• 39:06
  wheelchair. But he just started preschool
• 39:07
  and he's loving it. So he takes his wheelchair there
• 39:11
  and he can get around using a Walker.
• 39:14
  He just chooses not to right now.
• 39:16
  It's like slow for him. And I've struggled so much like
• 39:20
  pushing him to do it. I'm like, use your Walker.
• 39:23
  And he's, you know, I have had to really let go of that control
• 39:26
  of like, you're not ready to yet.
• 39:28
  You don't want to and you don't care that you're crawling
• 39:31
  around. So why should I care?
• 39:32
  And so having to let go of that has been a really big learning
• 39:37
  for me, just like letting go of the expectations and the
• 39:41
  milestones because I think he'll get there, but it'll just be be
• 39:45
  in his own time. But yeah, we we travel a couple
• 39:50
  times a year to go to a private therapy clinic in Alberta.
• 39:54
  That has like made huge difference for him.
• 39:57
  And he has physio a few times a week and.
• 40:01
  Swimming and all the things, but we try our very best to balance,
• 40:07
  you know, doing early intervention with living a fun
• 40:13
  normal life. Like this summer, you know,
• 40:15
  after this was a tough winter for us.
• 40:17
  The surgery on his feet was really, really hard on him.
• 40:20
  It was super traumatic. It was really painful.
• 40:23
  And he pretty much revolted against anything after that.
• 40:28
  And just like, you know, I think was trying to have control back
• 40:31
  of his own body and I, it was hard for all of us.
• 40:35
  It was, it was a tough winter and so we just cancelled.
• 40:38
  I cancelled every single appointment possible.
• 40:40
  We just took this summer and like went to the beach and went
• 40:44
  to the cabin and went boating and did all the things.
• 40:47
  And just like really for the very first time in four years,
• 40:50
  like settled into a summer of just enjoying life.
• 40:54
  Because you, you know, there's a balance between pushing,
• 40:59
  pushing, pushing to have a certain outcome and then also
• 41:02
  just like, surrendering to the fact that, like, he's his own
• 41:05
  person and he's going to choose how that looks for him and when
• 41:10
  he gets there. And yeah, wow.
• 41:14
  And I bet. That was his way of, you know,
• 41:15
  using his own intuition or his own and a voice, if you will, to
• 41:20
  say like no, enough. Like it probably came across as
• 41:23
  like what a four year old, how it comes across as a four year
• 41:26
  old. But you know, for all it's
• 41:28
  probably hard for you to hear. But maybe that like, OK, yeah,
• 41:31
  this is this is just what you need.
• 41:33
  Maybe he was sensing it's what you all needed to just.
• 41:36
  Yeah, but we did. Yeah, yeah, we did.
• 41:40
  Like, you know, I, I went on medical leave this winter and I,
• 41:43
  I came back and I was feeling it too.
• 41:45
  I was like, I'm not, you know, I'm not ready to go back.
• 41:47
  Like that was traumatic. Like that was, that was tough.
• 41:51
  Like this is this is a hard situation to navigate.
• 41:54
  And we take them to an osteopath.
• 41:57
  We take them every week for like the last three years.
• 41:59
  He's just so, so gifted. I don't know, Do you believe
• 42:04
  this kind of stuff? Like energetically?
• 42:06
  But he was like, he's got a bubble up around him.
• 42:09
  Like he doesn't want anyone in his space.
• 42:11
  Like he has a protective, energetic bubble around him.
• 42:14
  And I was like, I believe you and I trust you.
• 42:17
  And we're just like, we're just gonna take a break and, and you
• 42:21
  can feel like you can especially.
• 42:23
  With osteopath feel. This shit, yeah.
• 42:26
  And you can feel the shift in him now like, you know, we've
• 42:30
  stretched, we've stretched speak every single night.
• 42:32
  We've done it for four years. Like he has muscle stem put on
• 42:35
  him every day, like he is like his space and his body is
• 42:39
  invaded in so many ways every single day.
• 42:41
  And like he's never put up a fight against it.
• 42:45
  And then suddenly he did. And I was like, we have to, we
• 42:48
  have to respect and listen to you on this.
• 42:51
  And there's no point in pushing because you're just, you're
• 42:54
  never gonna get anywhere. But now that we gave him that
• 42:56
  space in that time, he's he's OK with it again.
• 42:59
  Wow, good for you. So you said you went on medical
• 43:02
  leave this past year. I given this as a podcast for
• 43:05
  parents who are typically working, working out of the
• 43:09
  home. What has that experience?
• 43:11
  I know you said it was really tricky go back to work and to
• 43:14
  work in a field that is now feeling way too close to home.
• 43:17
  What was it like to, you know, just be back in that field
• 43:21
  working? What led to you deciding to take
• 43:24
  or you know, needing to take, a medical leave?
• 43:27
  Yeah, I took well in the fall before we went on surgery, I
• 43:31
  just, I was having, I was having full blown panic attacks, like I
• 43:35
  couldn't go to work. I was just, you know, I think
• 43:38
  like the three years of stress really caught up to me and
• 43:42
  living in survival and then just it's slowly taking over my
• 43:46
  nervous system. So I took medical leave to go.
• 43:49
  We went back to, we went to the states for a month and then we
• 43:52
  came home for a couple weeks and we went back for another couple
• 43:54
  weeks. So we like collectively,
• 43:56
  November, December, January, we were mostly gone.
• 44:00
  So he took the time off for that and then we came back and I
• 44:03
  just, you know, I didn't anticipate his recovery to be as
• 44:05
  tough as it was. He had scars like the whole
• 44:09
  length of his feet inside and out and he wouldn't let anyone
• 44:13
  touch him. And it was just so hard to see
• 44:17
  and to handle him in so much pain.
• 44:20
  And, and yeah, it's tricky. It may work because I'm dealing
• 44:24
  with kids that are, and parents that are dealing with tricky
• 44:28
  things and, and I just don't have the same capacity.
• 44:32
  I have to give that out to other people anymore because I'm, I'm
• 44:35
  giving it to me and I'm using it up myself.
• 44:39
  And I had to just delay because I wasn't ready and I eventually
• 44:45
  had to go back because my time had run out.
• 44:48
  So I, I wasn't, I wasn't really ready.
• 44:50
  But yeah, it's a balance. Like some days I find it really
• 44:54
  triggering and some days I'm really happy to be able to offer
• 44:58
  the guidance and support. But I don't know, like, I think
• 45:02
  in anything, I think as parents in general, like, and his moms
• 45:06
  in particular, you go, you go to school and you get this job and
• 45:09
  then you have kids and you're well, I just, part of me just
• 45:13
  wants to be a mom and be at home.
• 45:14
  And then maybe I want to do this other thing.
• 45:16
  And I've just been trying to like, you know, I really value
• 45:19
  my job and the time I've had with it and I'm still doing it.
• 45:23
  But also just like, you know, going down different avenues and
• 45:26
  being like, it's OK to switch it up because, you know, that's
• 45:31
  gross and that's life and and that's change and that's
• 45:35
  natural. Absolutely.
• 45:38
  There's nothing more natural than just changing and evolving.
• 45:41
  What's what's unnatural, I think is continuing to push along in
• 45:45
  something that's not working. And not that we're saying that
• 45:47
  about your job, but you just seem open to just going step by
• 45:52
  step. I'm sure that's a big learning
• 45:54
  from all this for you has been and for any of us who've gone
• 45:56
  through stuff, you're just like, I can only you just gotta go day
• 46:00
  by day or you know, the old Alcoholics Anonymous, like one
• 46:03
  day at a time. It really does.
• 46:06
  It really does help. What has gotten you through
• 46:09
  these last four years, you know, just the highs and lows, What
• 46:13
  has been consistency, self-care? What does that look like for
• 46:16
  you? Yeah, I, I feel so grateful to
• 46:19
  have both of my husband and my families in town.
• 46:22
  We have so much support that and, and, you know, having a
• 46:26
  strong foundation of a relationship with communication.
• 46:30
  And like I've had some of my friends say to me, you know, you
• 46:32
  don't talk about how you're feeling.
• 46:34
  And I'm like, well, I, you know, I talked to Mikes because he
• 46:37
  actually understands exactly what I'm going through because
• 46:40
  he's going through it too. And so we have that
• 46:43
  communication, which has been completely just crucial in, in
• 46:47
  the unfolding of this. And then unbeknownst to me, I
• 46:50
  started a Instagram account when Asher was a year old, like on
• 46:53
  his birthday, because there was so much unknown.
• 46:57
  And I had, you know, aunts and uncles and friends asking like,
• 47:02
  what's going on? And it was so overwhelming to me
• 47:05
  to share in the moment when I didn't want to.
• 47:08
  And I just, I started writing about it and I started sharing
• 47:11
  that way. And it's evolved over time.
• 47:15
  It started with like really concrete updates and now it's
• 47:18
  more evolved into like my perspective, which I think is
• 47:21
  maybe how you found me. But I, yeah, I just started,
• 47:25
  started writing and sharing that way and that, you know, I have
• 47:29
  like pages and pages and pages that I've never ever shared.
• 47:32
  But maybe I maybe I'll be able to write a book one day, but
• 47:37
  just just the like processing it through writing has been helpful
• 47:43
  and sharing it and connecting with other people that are like
• 47:45
  going through not the exact same situation, but navigating
• 47:48
  something similar and having them reach out and being like
• 47:50
  this helped me so much. Like that has been really,
• 47:55
  really amazing for me to see. And just, yeah, I think sharing
• 47:59
  it on my own terms and and how I want it to be seen in the world
• 48:05
  or heard in the world has been one of the biggest helps for me.
• 48:09
  That's. So beautiful.
• 48:10
  I know you've spoken about, I don't know if you've used the
• 48:13
  word ablest, but just perspectives, different
• 48:16
  perspectives and those who might knowingly or unknowingly have an
• 48:20
  ableist mentality, meaning just not in recognition of those who
• 48:25
  have and operate in the world in a different way from themselves.
• 48:28
  You actually had such an awesome, whether it was a series
• 48:32
  or story post, whatever it was on Asher going to preschool or
• 48:35
  daycare and what that integration looked like and how
• 48:38
  you were, you know, introducing him to some of the other kids,
• 48:41
  some of like the questions, you know, maybe they'd ask answering
• 48:44
  that. How would you say is a really
• 48:47
  great way for someone listening to, yeah, you know, do they
• 48:51
  themselves be really inclusive to a family who just operates
• 48:54
  differently from them to a child who operates different from
• 48:56
  their child? What are some, you know, what
• 48:58
  are some ways that we can be allies to children like Asher?
• 49:03
  Yeah, that's a good question. And and like, you know, until
• 49:07
  you experience it, you don't really know.
• 49:10
  And you might think you're, you know, I was like, oh, I'm
• 49:12
  completely open. I know.
• 49:13
  And I know all of these programs and ways to be inclusive.
• 49:16
  But you know, until you experience it, you're like,
• 49:20
  whoa, it's way different than I thought, than I thought.
• 49:23
  And I think just being just being open with and asking
• 49:27
  questions, like I just really encourage, you know, people will
• 49:31
  be like, why is Asher in a wheelchair?
• 49:32
  And I'm like, ask him like, and I've coached him to say, you
• 49:36
  know, my legs, my muscles didn't grow the same as yours.
• 49:39
  I'm working on getting strong. And I had so much nervousness
• 49:45
  about sending him to preschool and how kids were going to treat
• 49:48
  them. And it's like bringing him out
• 49:49
  in the world in his wheelchair. It was so hard for me to
• 49:52
  overcome. Nothing to do with him.
• 49:54
  Like he's completely fine with it.
• 49:55
  It was my thing and and it's wildly surprising and reassuring
• 50:02
  to see, you know, Elise, young kids.
• 50:04
  I don't know how it'll be when he gets older, but for the most
• 50:06
  part everyone's just like really curious and wants to include
• 50:11
  them and and the first day of preschool everyone was crawling
• 50:14
  around on the floor with him. But yeah, I sent a thing home.
• 50:19
  Yeah. I sent a message home to fat to
• 50:23
  the family, just family, just saying, you know, like, this is
• 50:26
  Asher. This is why he uses a
• 50:28
  wheelchair. Like, feel free to ask him these
• 50:30
  questions. It's OK if you want to touch his
• 50:34
  wheelchair, but you need to ask him first.
• 50:35
  It's an extension of his body. And I think just teaching kids
• 50:40
  and people that, you know, everyone moves through the world
• 50:43
  in a different way. And I think, you know, a bigger
• 50:46
  piece of it is that I've learned nothing to do with like mobility
• 50:51
  differences or anything, but people, when you take a step
• 50:54
  back, everyone's going through something hard or most people
• 50:57
  have gone through something hard.
• 50:59
  And so just being empathetic to the fact that, you know, how
• 51:02
  someone shows up on the outside may not be the truest form of
• 51:07
  them on the inside. And so just like having
• 51:09
  compassion for everybody that you meet along the way and just
• 51:13
  being open to hear and learn about their story because it
• 51:16
  might be wildly different than than you think it's going to be.
• 51:20
  Absolutely. And Speaking of differences, how
• 51:22
  has your daughter not speaking on her behalf, but in what
• 51:25
  you've observed of parenting two children who have different
• 51:28
  needs, physical needs, how has that been to ensure that, oh,
• 51:34
  goodness, there is equity, I can't say equality, but equity
• 51:38
  in the household. You know, that you're spending
• 51:41
  the time that you wanna be spending with Scotty as well.
• 51:43
  Like, how does that go? I can only imagine that would be
• 51:45
  complicated. It is was tricky.
• 51:47
  You know, I think that if I could have reversed a little.
• 51:50
  Bit I, I sent her right to preschool that fall and it was
• 51:54
  hard on her. And I just like, you know, we
• 51:56
  were like, you have to go. And I wish that I had given
• 52:00
  myself the permission to be like, no, our circumstances are
• 52:03
  different. Like let's just let her hang out
• 52:04
  with her grandparents in her safe space because she's really
• 52:07
  empathetic and she takes a little while to warm up.
• 52:09
  And, and she, we were gone every single week for nine months,
• 52:14
  like we were in Vancouver or Victoria every single week,
• 52:17
  never the same day, never the same amount of days.
• 52:20
  And she was like so loved up by her grandparents, but it was
• 52:25
  hard for her. You know, she got to the point
• 52:27
  where she wouldn't even let me go to the grocery store.
• 52:30
  And so we had to really like invite her into the, into the
• 52:35
  experience and we always take her if we're going anywhere from
• 52:38
  like more than two days, we always take her.
• 52:41
  Now we go to Alberta for two weeks every few months.
• 52:45
  And we took her once and she was like, well, that was boring.
• 52:49
  So now she has the choice to go, but like, if we're going very
• 52:53
  far away, she'll come and we include her and she's really
• 52:57
  good. I, we both prioritize like
• 53:00
  spending time with her and doing activities with her.
• 53:02
  But she said to me that he, like you always ask me to get Asher's
• 53:06
  leg braces. And I was like, OK, thanks for
• 53:08
  telling me that. I will make a mental note that
• 53:12
  I'm not going to ask you to do that anymore.
• 53:14
  That's not your responsibility. Thank you for telling me.
• 53:17
  And she said, you know, Azure gets treated differently than
• 53:20
  me. And I think it's just it's true.
• 53:23
  And at the same time, it's also educating her that he gets
• 53:28
  treated differently because he has different needs and he
• 53:32
  doesn't get to go play soccer on Saturdays or, you know, so it's
• 53:36
  not making, I never want to make her feel bad for the life that
• 53:39
  she has, but I also want her to understand that just people's
• 53:43
  lives look different. No matter what in life, like No2
• 53:47
  lives are going to be the same. So yeah, I'm still navigating
• 53:50
  how to how to teach her that and how to best her, foster that
• 53:56
  within her. But she loves her brother so
• 53:59
  much and she's just his biggest, biggest cheerleader.
• 54:04
  The fact that he she was. The first person that he crawled
• 54:07
  to, I think it's a testament to their little bond that they've
• 54:09
  got going on too. He's probably like, finally I
• 54:11
  can get you. Yeah, no, they have a very good
• 54:16
  relationship. That's so beautiful.
• 54:18
  Well, I. Is there anything you want to
• 54:20
  say I just because you're such a beautiful writer, is there
• 54:23
  anything that you feel is missing from our conversation
• 54:27
  today that you want to share? No.
• 54:29
  I think just, you know, give yourself space to be open to new
• 54:33
  opportunities and experiences that present along the way.
• 54:37
  I think that's what I've been trying to do.
• 54:39
  And just, yeah, you know, we are, we are in the middle of
• 54:46
  like we built a brand new house when we, I was pregnant and it
• 54:51
  doesn't work for my family anymore.
• 54:52
  And so, you know, just something I never ever thought I would let
• 54:56
  go of or move on from. And I don't know if I'm for sure
• 54:59
  going to, but just, you know, being open along the way to to
• 55:05
  what that your life is going to evolve in different ways than
• 55:09
  you can't see the big picture. And so just following your
• 55:12
  intuition and, and saying yes to different experiences that are
• 55:16
  going to help help you grow and help you see and expand.
• 55:23
  And yeah, just like I if if I was to give one message to
• 55:27
  anyone listening, it's just like it took me a really long time to
• 55:31
  find strength in my voice and sharing being vulnerable.
• 55:37
  It's really hard, but the power and the collective like support
• 55:41
  that comes through it is been so just magical and so healing in
• 55:48
  so many ways. And so just, you know, follow
• 55:51
  your intuition and use your voice and Share your story
• 55:55
  because everyone's perspective and story matters.
• 56:00
  And that, at the end of the day, is like part of the human
• 56:02
  experience and how we all learn together.
• 56:08
  That moment. Thank you.
• 56:09
  And it feels like a weird follow up now because I just wanna end
• 56:13
  it there. But I do ask everybody, what is
• 56:15
  something, Nikki, that you would say you're still trying to
• 56:17
  figure out or you're figuring out in this moment?
• 56:20
  Yeah, I think. I'm really trying to figure out
• 56:22
  where, you know, where I want my career and life to go.
• 56:26
  I like, I love writing, I love design.
• 56:29
  I'm so passionate about design. And recently I've found myself
• 56:34
  dabbling in the online space. And so I think, you know, I
• 56:37
  still have my job, but I have recognized that my life has
• 56:41
  taken a different path. And and so working in a very
• 56:44
  typical regimented job isn't probably going to be the last
• 56:50
  thing I do. And so, you know, just being
• 56:53
  open to changing it up and, and following, following those pings
• 56:58
  of new experiences that come through.
• 57:01
  Wait to follow along. It's so amazing.
• 57:03
  Wonderful. Where can everybody find you?
• 57:05
  If they want to see and read your writing, if they want to
• 57:08
  learn more about your story, Asher story?
• 57:11
  Where can they find you? Yeah, I have.
• 57:13
  I have a personal Instagram and Nikki Holka app and then Asher
• 57:17
  has his own Instagram and I've I've I do share on there, but I
• 57:20
  have moved away a little bit because I have come to the
• 57:23
  realization that he's going to read it someday.
• 57:25
  So I'm trying to share a bit more about, you know, my
• 57:28
  perspective and less about him because he has his own story and
• 57:32
  he might want to share that one day.
• 57:34
  But his is aligned with Asher. And then I made a sub stack
• 57:38
  because I just found, you know, Instagram really limits the
• 57:42
  amount of writing you can do. And I just was always editing it
• 57:45
  down and I was like, I don't, I just want to share what I want
• 57:48
  to share. So I have a sub stack called the
• 57:51
  strength in your scars name. Hits me every time.
• 57:53
  It's so beautiful. Nikki, I wanna thank you so much
• 57:56
  for coming on, for being so open and honest and sharing this
• 58:02
  story. It's such a beautiful one.
• 58:04
  You're such a beautiful person. You're so incredibly resilient,
• 58:07
  even if you probably not wanted to have to be resilient.
• 58:10
  But thank you. I really appreciate you.
• 58:13
  Thank you. So lovely to connect you.
• 58:16
  Too.