Welcoming a child into the world is a monumental moment in a parent’s life. But for Nikki Holekamp and her husband, amidst the joy and celebration of her son’s birth, it was also a time of heartache, confusion, and fear.
Their son Asher was born with Distal Spinal Muscular Atrophy, a rare genetic condition. One in a million people will have this diagnosis. At less than two years, and limited mobility in his lower body some specialists suggest Asher may never walk. Months of searching for a proper diagnosis and the right medical services left Nikki stressed, frustrated, exhausted. Knowing the importance of early intervention, they were in a race against time.
What helped hold Nikki steady during such a turbulent time?
Join us for this episode as Nikki shares her reasons for finding joy in the everyday moments and cultivating hope, even in the uncertainty. Discover the power of persistence, the value of community, and the strength of self-care.
Nikki’s story is a reminder that even in the darkest moments, each of us has the courage and tenacity within us to find the light at the end of the tunnel.
Go Fund Me Page: gofundme.com
Instagram: Asher
CBC Interview: cbc.ca
Masterclass: aresilienceproject.com
Welcoming a child into the world is a monumental moment in a parent’s life. But for Nikki Holekamp and her husband, amidst the joy and celebration of her son’s birth, it was also a time of heartache, confusion, and fear.
Their son Asher was born with Distal Spinal Muscular Atrophy, a rare genetic condition. One in a million people will have this diagnosis. At less than two years, and limited mobility in his lower body some specialists suggest Asher may never walk. Months of searching for a proper diagnosis and the right medical services left Nikki stressed, frustrated, exhausted. Knowing the importance of early intervention, they were in a race against time.
What helped hold Nikki steady during such a turbulent time?
Join us for this episode as Nikki shares her reasons for finding joy in the everyday moments and cultivating hope, even in the uncertainty. Discover the power of persistence, the value of community, and the strength of self-care.
Nikki’s story is a reminder that even in the darkest moments, each of us has the courage and tenacity within us to find the light at the end of the tunnel.
Go Fund Me Page: gofundme.com
Instagram: Asher
CBC Interview: cbc.ca
Masterclass: aresilienceproject.com
Cindy Thompson - A Resilience Project Podcast
Building Resilience Among Humans One Conversation At A Time
EP89: NikkiHolekamp – One In A Million
Cindy Thompson: Hello, friends. I am Cindy Thompson, and this is ‘A Resilience Project.’ This is a space where stories are shared and possibilities are discovered. I invite you to partner with me in cultivating resilience among humans, one conversation at a time.
Cindy Thompson: Hi everyone, before we dive into this episode, I am excited to offer a virtual 4 week Resilience Masterclasses. Together we will be taking a deep dive into 4 of the pillars to growing your resilience practice. This will help you to cultivate more joy, manage stress more effectively so that you can thrive. Go to aresilienceproject.com to learn more. The link will be in the show notes! I hope to see you there!
Now let me take you on a family journey that will cause your heart to grow a little bigger.
What would be your initial thought if you knew your odds were one in a million?
For those of you who are parents or know someone who is a parent, you will understand what it is like to dream about having a family. It is about hope and for many, listening to that calling; to live into another form of purpose and create an extension of ourselves.
Like the dreams deep inside us, we must create space to imagine the future. For my guest Nikki Holekamp, a pediatric occupational therapist, expecting their second child was part of a dream she and her husband Mike were excited for.
I don’t think it is possible however, for a parent to be prepared emotionally for their child to have a rare condition. One so rare, any child born today has a one-in-a-million chance of having this disorder. Nikki is no stranger to supporting children with delays or limitations in physical and cognitive development. However, she could not have anticipated that her skills and insight into the medical system would become her secret weapon to advocate for their son Asher’s care.
What is it like to fight against time when your child's mobility is in jeopardy?
18 months and 20 flights later, Asher's first year of life has been filled with medical appointments, specialists, and surgeries. In this conversation, Nikki highlights some of the challenges they encountered in seeking a diagnosis and securing the medical services Asher would need in a race against time. In the hope of helping others, she is speaking to the value of persistence, resourcefulness and emotional resilience necessary to keep moving forward.
I am so glad you are here for this episode. Together we are holding space not only for the first 18 months of Asher's story but also a family story of resilience.
Here is my conversation with Nikki…
Nikki, I'm so grateful that you would be here on "A Resilience Project" with me.
Nikki Holekamp: Thank you for having me.
Cindy Thompson: My honor. I feel like this is an important conversation we're having because as a parent myself, I can only imagine some of the things you folks have been walking through and experiencing in your life, in your little family recently.
To me it feels like a true privilege to highlight some of the things that people might experience that we don't know about, that we don't even hear about. Being a parent is hard enough. It's a big endeavor. One of the hardest things we'll ever do, period. But then you add in some unpredictable pieces that adds a whole other layer to it.
For that reason, I'm really glad we're going to be talking about your family, about Asher, and some of the things that you've been learning along the way since Asher came into your life. I'm going to get you to introduce us to what Asher has and how that affects him.
Nikki Holekamp: Asher was born with severe leg contracture. What that means is the muscles in his legs, extremely weak and almost non-existent. He barely kicked in utero. I found out about halfway into my pregnancy that he was going to have club feet, which in retrospect is quite an easy fix.
I knew that there was going to be some medical complications. We met the orthopedic surgeon in advance. Was not prepared for the moment when he was born how he looked. His knees were completely bent, unmovable, his one hip was up to his stomach and out to the side. His feet were turned inwards, which I expected, but his legs just looked like they looked crumpled up, and they were skin and bones and they were so stiff.
Later on down the line, we found out that he actually has an extremely rare form of spinal muscular atrophy. One in a million people have it. It's so rare. There's no treatment for it at this point in time. Although there is someone trying to develop something. There's a treatment for the more classic forms of spinal muscular atrophy. Asher's really just affects his lower body.
He's got about 10 to 20% makeup of musculature in his legs compared to you and I. And prior to November the nerves weren't sending the signals properly to his legs. That very small amount, he did have he wasn't even able to access. But now thankfully he can use those muscles a little bit so he can crawl now and he can get up on his knees and do little things like that.
He's a resilient little guy. He's been through a lot of medical care in the last year and a half. He's 18 months old. Continues to surprise us every day.
Cindy Thompson: I can only imagine, you have your first child, Scotty, a little girl. When your first child is born we all hope this baby that's going to be healthy and well. There are so many variables that we can't predict.
Then along comes Asher, and you have your second pregnancy. It sounds like you had a bit of a heads up that there may be some health complications, but you really don't know what to expect fully until he arrives. Walk us through that day in the delivery room and what the medical professionals were saying or how they were responding to support you in that moment.
Nikki Holekamp: There was a lot of anxiety for me in the buildup to his delivery. I actually was induced with my daughter because they thought she had growth restrictions. I was monitored extra closely with Asher. Aside from picking up his club feet, they weren't concerned. I did have extra ultrasounds every couple days just monitoring his growth and nothing else was ever picked up. They thought his femurs were short but that just ended up being because of the position of his legs.
He was born full term, but I did get induced again. I asked for it because I was tired of the waiting game to see what was going to happen. There was no pediatrician on call the day he was born. We have two pediatricians who work extremely hard, but they can't work seven days a week. We had a great team of midwives and doctors present. About halfway through my delivery, his heart rate started dropping. He almost was an emergency C-section, which in hindsight, he should have been. He broke his femur during delivery. And it wasn't picked up for three weeks which would've been agonizing for him.
When he was born the room was a bit somber. We did have a doctor in place of a pediatrician, check him over. And she said he scored nine out of 10 on his Apgar scores. He was perfectly healthy except for his lower body.
It was scary and there was a lot of shock and we couldn't see a pediatrician even within days of being discharged. And the hospital was so busy after he was born we barely had much support aside from the midwives. But aside from his legs, he was healthy.
We saw an orthopedic surgeon within days of him being born. We drove three hours to another hospital where there's a pediatric orthopedic surgeon. I was expecting a whole day of tests and x-rays and we saw him for about five minutes and he put casts on Asher's legs, which is the treatment for club feet.
One of the more traumatizing days I've had in the last year and a half because he had a broken leg that no one knew. It was excruciatingly painful for him. And it's not supposed to be, it's supposed to be a gentle, slow, progressive stretch of the feet to get them in the right position. But they had to stretch Asher's hips and knees and feet at the same time. That was our first real moment in time with the specialist community that we've been down the road with the last year and a half.
Cindy Thompson: You are actually a pediatric occupational therapist. Your role is to go in and help families, help little ones recover from various types of challenges. Here you have this background of working with the professionals, working in that community.
What was that like for you to feel like you weren't necessarily getting the support you needed?
Nikki Holekamp: Yeah, it's interesting. I actually went back to work this weekend. I wasn't sure how I was going to feel because I've been living my work every day. It's been hard because I have known how important early intervention is and it created a lot more frustration probably.
It has probably helped Asher immensely because I do know the importance of early intervention and I can understand the lingo and I can do the research properly. I have the confidence, I think, to talk to the professionals in a different manner and to maybe question them a little bit more.
I didn't develop that confidence right away. It took me a couple months to get there through this process. But I definitely have it now and I think a lot of that is from my interactions in my work. It's what I do every day is advocate for little ones.
Cindy Thompson: It's different when you're the mom.
Nikki Holekamp: It's so different when you're the mom.
Cindy Thompson: I can only imagine. Because now you're looking at it as wanting to learn from them, advocate for Asher, ask all the questions, but at the same time, trying to get up to speed. What is this going to mean for your little guy? What is this going to mean for your family? How is this going to impact him long term? There's so many questions that must have been going through your mind. I can only imagine to find the clarity and the energy to ask all the right questions in those moments when you have that little window with specialists.
Nikki Holekamp: Yeah. Our first doctor who was the main point of care we developed a really strong relationship. I asked him every single week, what do you think's wrong? What's going on? What is this? This can't be normal. He's in excruciating pain.
I think doctors are really used to handholding parents and families and patients because a lot of people don't know. It is shocking and it was shocking, but I've seen a lot of different conditions in my career. And while it was shocking to me, I still knew the importance of figuring it out as soon as possible.
I don't think he knew exactly what was going on right away. But he was trying to not overwhelm us with what it could be, where I wanted to know what it could be. We didn't actually get a proper diagnosis until he was seven months old. It ended up being through genetic testing that we got that diagnosis.
Our physiotherapist that works with Asher actually said to him at one point, "You can tell her what you think and she can understand. I think you need to understand that she understands differently and needs to know differently than other parents." That was a shifting point for us.
Cindy Thompson: It speaks to the importance of a diagnosis because then you know what it is that you need to do to treat it to help him. Yet what's coming to mind is one in a million. This is not something doctors would see every day. They do not come across this, that they would easily identify it. Even for them, they might have been looking at it from the lens of, these are some things we might typically see, or this is what it could be. It's sad to think it took seven months.
Nikki Holekamp: Yeah. I think from our experience in going through that, it seems like most professions like really hone in on what they're looking at. So from orthopedics, who's our main point of contact at first, they're looking at the bones and the joints and the joint contracture.
There is a more prominent diagnosis for that. It's called arthrogryposis. It means stiff joints but it is an umbrella term for many different things. He was looking at it in his mind, but wasn't, we weren't getting into the underlying reasoning. I asked repeatedly. I want to see neurology. We need to do more tests. I want an MRI.
We actually got a second opinion when Asher was about four and a half months old, and that person really changed the course of Asher's life. I feel like, he was just our North star and he was the very first person that was honest with us but in a kind way. Everyone else had been really kind, but maybe not as honest. I really respected and needed that honesty because it did help us get to a diagnosis.
He was the top club foot doctor in Canada, and he had actually retired and come back from retirement. The timing was just serendipitous. I just emailed him on a whim one day and he called me and he said, "Bring him to Vancouver. I've seen kids with these joint contractures before, but this is much more complicated and you need to find the people that have seen this before. I will support you and I will be your captain," he called it, "But I need direction too and you need to find someone who's seen this before." You know what? It's funny, I'm just realizing we got the diagnosis a year ago today.
Cindy Thompson: Oh, how timely then, that we would be meeting today.
Nikki Holekamp: It is timely. Yeah. We got the diagnosis a year ago today and we had booked a consult online with a specialist out of Florida who had a cutting edge surgical technique to straighten kids' legs. The classic technique is putting rods and pins and it doesn't give them much range. It gets them straight, but it doesn't give them much range of motion. We had booked a consult with him online and it ended up being within days of us getting this diagnosis.
He had treated a kid in New Mexico the year before with the exact same diagnosis. He put us in touch with the family and that really was also life changing and so helpful for us. Just having him having seen it before and having other team members that had seen it before really helped us.
He pointed us in the direction of a researcher at John Hopkins that is researching this and he gave us a list of things to get our local doctors to look for. They wouldn't have looked for those things otherwise, and we wouldn't have pushed them to investigate things further.
Cindy Thompson: What's resonating with me is, at a time where you feel so helpless, you're really trying to gain some agency over your lives. To really lean into and piece this puzzle together. When others might've stopped at a certain place, they might've stopped and said, this is what you're dealing with. The fact that you dug and you advocated and called and emailed and got your captain in place, I can see how that would've then gave you some steam to keep going. Tell me what it was like that day you got the official diagnosis to maybe get a more clear picture and answer.
Nikki Holekamp: Yeah. It's really wild that we're having this conversation. We made sure that our daughter was out for the day because we had no idea what was going to come of it. By this point, we're seven months in and Asher's been out of cast for a couple months and he's got all kinds of orthotics and leg braces. His legs are still skin and bone and they don't move. And I've been begging for neurology consult now for a good three months, mostly being unheard.
We have no idea what the geneticist is going to say to us on the phone and prior to us getting it she even said to us, " Sometimes these things are so rare we come back with nothing." So it might be nothing or it might be something. It was shocking. I think both my husband and I listened to her on the phone for an hour. I wrote a lot of things down. And I think it's like anyone that goes to the doctor's appointment and gets bad news. You don't process it at first. You're just hearing it. We went for a walk after, it was a beautiful day. I went shopping and the next day I was in tears on the floor for most of the day. Pure shock on both of our accounts. And then the next day was really hard.
Then after that we had those appointments with the doctors in the States that had seen it before. You're right, you said it gave me steam. It definitely gave me steam. The geneticist actually put in an urgent referral to the neuromuscular team at Children's Hospital.
We got in on a cancellation within a couple weeks. Things did happen really quickly after that in terms of being seen. it was a really hard first couple of days and just so much unknown. The geneticist, and even the researcher, they think what Asher has is congenital, which means it's present at birth, which means it's not supposed to be progressive. Progressive things usually are later onset, and then they slowly are more degenerative. Asher's presentation at birth they think stable. And so far it seems to be for the most part. It's just going to be a lot of seeing how he grows and develops.
Cindy Thompson: What is the prognosis for how this will impact Asher? What would be some next stages that you might anticipate that we can understand big picture, how this could impact him long term if he continues to not progressive, but where he's at right now?
Nikki Holekamp: Yeah. Right now he can crawl and he has sensation in his legs. He now has the connection to the muscle in his legs. We actually took him to Florida in November to have surgery on his spinal cord. It wasn't offered in Canada. That made a huge difference to him. We actually talked to that surgeon a couple days ago and he said to us you're going to have the next six to 12 months, he's going to be making those connections still, and this is the chance to make change.
He can't stand on his own yet. Or walk on his own yet. He has a bunch of different pieces of equipment to help him. He has a walker and he's got leg braces and orthotics. He has a wheelchair, which he thinks is really fun because he can go fast in it. I had a hard time accepting that piece, but it gives him freedom.
Our hope is that he will walk. I think it might look different but I am very hopeful that he will get there and I think he is also determined to get there, which is a huge factor. He's motivated, he wants to move around, he wants to walk. I think he will. His muscles are always going to be weaker than a typical person so he might not have as much stamina. It's going to take him a while. I don't anticipate it'll happen anytime soon. But I hope that he'll walk into kindergarten.
Cindy Thompson: That's a beautiful vision. What's occurring to me is that Asher doesn't know any different right now. We don't know what we don't know. Sometimes kids can be so resilient, they can just lean into whatever's going on, and make the most of it.
I'd love to learn about what you're seeing in Asher, in his determination, in his motivation to move and use whatever apparatus, whatever equipment he has, to find that mobility. I'd like to learn about his personality. Tell us about Asher.
Nikki Holekamp: His personality is vibrant. I have a daughter, first of all, and in comparison, he is a true little boy. He has boy energy. He is so charismatic and so interested in people. He blows kisses to every doctor when he leaves the appointment. His smile just brings you to your knees.
He loves dancing and it looks different for him, but we will put on music as a family and dance around the house and he will go in his stomach and turn around in circles on the floor and he just thinks it's the funnest thing ever. It is hard for me sometimes. But then I have to stop and remind myself that he has so much joy right now and he's having so much fun and he's so happy.
You're right, he doesn't know any different, and I think that breaks my heart a lot of times, that he doesn't know any different. It's also great because he doesn't, and I just hope that the confidence and charisma that he has now, he's able to bring with him through his journey because it's not going to be the easiest and things aren't always going to look the same for him.
He is such a confident, outgoing hilarious little person that I hope he's able to keep that with him.
Cindy Thompson: It sounds like he already is because he's finding joy in the simplest of things. They may not be the same accomplishments that other kids might be achieving at a certain stage, but I can hear that just his personality is coming through and not only finding joy for himself, but bringing joy to others around.
Nikki Holekamp: He really brings joy to others around. He's such a happy little kid and he just goes with the flow. He has therapy five days a week for an hour, and he thinks his therapist is his best friend. They just have so much fun together. He's been on 20 flights in his year and a half and he just waves at everyone on the plane and goes up on the seat and pokes his head over. He's developed a lot of other skills that kids that are a year and a half wouldn't have yet because he has to go in a standing frame every day for his joints and bone density. He ends up really stationary at a table for an hour and a half every day. I think some of his fine motor skills, some of his play skills, some of his language and cognitive skills are probably further advanced because his gross motor skills aren't.
Cindy Thompson: Yeah. You're starting to give us a glimpse of what a day in the lives of your family might look like.
Nikki Holekamp: Yeah. It's busy around here.
Cindy Thompson: I wanted to circle back, Nikki, because I wanted to point out that surgery that Asher had in November, it was like a lottery that you won.
Nikki Holekamp: We are going to a neurological rehab center in two weeks in Los Angeles. And yeah, 30,000 people from around the world applied to get in every year. We didn't get in when I first applied. It opens for a day in September for the whole year. I equate it to getting Coachella tickets back in the day.
He didn't get in and after he had surgery in November, I emailed them and said , he just had this surgery on his spinal cord. He was on the wait list and they made us a spot. We're going down there in two weeks.
The surgery that he had in November, what's called a tethered spinal cord. It means that the nerves in his spinal cord, they're supposed to end at a certain point and be free floating and they weren't, they were stuck at a part of his spine that was causing a limited connection to the nerves in his legs and lower back. That was one of the things that the researcher in Boston at John Hopkins pointed out to me. He said, lots of these kids are presenting with a tethered cord.
We're not really sure why it's not a diagnosis that would typically be flagged for having this, but we usually urge to get an MRI and really look into this. I pushed really hard for that and, it was hard to get and it was hard to get the results looked at in a meaningful way here before we even talked to anyone at our local children's hospital.
I had got the results and mailed them to the orthopedic surgeon in Florida that we contacted because he also said you need to get this looked at. I won't even touch his knees or his legs until you have this ruled out because we are seeing this as being so common in these kids and it's not being picked up properly.
Yeah, the surgeons and doctors here just had a different opinion on it. And I think it speaks to the rareness of what Asher has and the capacity of our medical system to acknowledge and properly deal with rare conditions. Ultimately we talked to four surgeons, two in Canada, two in the States, and the two in the States said, yes, it's tethered, it needs surgery. One in Canada who was the deciding factor for us gave us some personal insight and he said I think you should find a surgeon that does this frequently and does it well because it's not that complicated of a surgery, but it is a neurological surgery and you want it to be done properly and they're probably not going to do it in Canada. If they do it, they probably don't do it very often. That was the clincher for us. We were like 95% going to go to the States and do it. But after we had that conversation, we booked it and we were in Florida within a month. They had him hooked up to a neurological monitoring system the whole procedure and the moment they released what they needed to, they said the signal to his legs improved immediately. And he crawled three days after surgery.
Cindy Thompson: Amazing.
Nikki Holekamp: Yeah. So we saw a big change with that and I think it was a big turning point for him and , it was one of the things that's given us a lot of hope, and it's one of the reasons I feel so compelled to share Asher's story. At the end of the day, doctors are just people and they have a lot on their plate. And if you're dealing with something rare, you become the expert and you are the one that has to fight for the right type of care.
I hope that Asher's story inspires people to feel like they have the ability to take their own medical care into their own hands. I didn't feel that way for the first four months of Asher's life. We were going through the motions and we had blind trust in all of our doctors and while they had his best intentions in mind, they weren't the right people for him. That's okay. Not everyone has to be the right doctor for you.
Cindy Thompson: I want to honor that this is a huge commitment to spend time communicating, mailing out the results, advocating, and the cost of going down to the States for these procedures. It's not easy. It's got to be a massive strain, and yet so important to do. You can't not do it.
Nikki Holekamp: Yeah. You can't not do it. His underlying genetic condition and the actual muscle makeup of his legs, we didn't know what the outcome would be.
We're taking him down to California in the next three weeks. So I'm really excited to see what he can do in this three week chunk of time.
Cindy Thompson: It's the importance of hope, just to know that there can be something that you can try or to offer him, that you will have known as parents who did everything you could to get these treatments, these methodologies, in place early on.
Nikki Holekamp: It really is. Hope has been like the guiding light for us throughout this entire process, particularly in the last year since we got that diagnosis. Talking to other families and finding the right doctors have given us so much hope and his resilience and his determination gives us hope every day.
Cindy Thompson: Nikki, I want to ask about your family. I want to talk about you and Mike, and I want to talk about Scotty. She's a big part of this family, and when one of the family members needs lots of extra help, I want to factor in Scotty and how she's doing with all this and what her relationship with Asher might be like.
Nikki Holekamp: Yeah. She has an incredible relationship with Asher. She is by far his favorite person. He points to her room the moment he wakes up in the morning. He tries to go to school with her. Last year was really hard for her. She was two and a half when Asher was born, almost three. And we traveled to Vancouver or Victoria almost weekly for a year. The days were never consistent.
We are so lucky. We have incredible family support. Both of our parents live here. We have extended family, brothers and sisters. She was never without a very caring, loving grandparent, but it became very hard for her. About four months in, she stopped wanting to go anywhere. She wouldn't go to daycare, she wouldn't go to grandparents. She wouldn't go to preschool. She had a period of time where she would have a panic attack if I went to the grocery store. We worked really hard to bring her back from that and we started bringing her with us, which makes the trip a bit more difficult. It was really important to start doing because she was able to see what we were doing and she was able to be part of a process and slowly warmed up to staying home again and slowly we stopped having to go as frequently and she's just come into her own.
She came to Florida with us for a month and so did my mother-in-law and she stayed and played and swam with my mother-in-law lots of days, but lots of days she wanted to come with us and she held Asher's hand while he got a few more rounds of cast done when we were in Florida.
There's a very top orthopedic doctor that we were talking about did a couple more corrective casts on his legs and helped get his knees straight. She came and held his hand through casting and urged him on with therapy. We try and schedule his therapy appointments when she's at preschool because we recognize that we put a lot of extra attention on him. We try and schedule a lot of his appointments when she's already doing something else. But when she is home, when he has therapy she's right in there and she's helping and she's playing alongside of him. We put him in his walker and take him outside and they throw a ball together and she's a big part of his life and I think she's a big motivation for him because she runs and jumps and climbs and dances and he sees her moving and he wants to move. She's an incredible little girl and she's so empathetic and she loves him so much.
Cindy Thompson: Some people might worry how she's doing with all this. Is she getting enough of what she needs? But at the same time, I think what your family is experiencing together is really giving her a chance to learn resilience, to learn how we get through hard things.
The fact that you have those dancing parties. The fact that you find moments to play together. And even though you have some tough things you go through and it takes a lot of time and effort, you still are there as a family together, and I suspect that's a huge part of the resilience for everyone involved.
Nikki Holekamp: Yep. She has developed a lot of resilience through this and a lot of empathy. She has the ability now to understand and explain what's wrong with Asher. She explains it in a way a kid would. I think that gives her a lot agency in knowing what we're doing. It helps her process us being away and now she's fine with it. Sometimes she comes, sometimes she doesn't. We make special time for her too and that's something my husband and I do just with her. I take her to dance every week and my husband takes her rock climbing. We carve out those special moments for her because it is important.
Cindy Thompson: Nikki, what resilience practices would you say have got you through this, either individually or as a family?
Nikki Holekamp: I think having my husband. If you knew him, he is a rock. I think having him to go through this with and have him mostly be home. He runs businesses that allow him to be home and be part of the day to day. I think going through this as a team is our biggest form of resilience practice. It's not something we do intentionally, like going to the gym or going outside. Just having him and having us divide and conquer. He does all of Asher's stretches and I do all of the communicating with all the professionals and all the organizing. We've landed our own roles and having that has been the most important thing in how we've been able to cope with this.
We both find time to exercise and I think let out that stress and emotion and just do something for ourselves. We both really value that and try and allow each other the time to do that in each other's day.
I think just having the community of support around us is another form of resilience that has helped us along the way. Our friends and family have been here every day since the beginning and they've helped so much with both of our kids. Our community has shown up for us in ways that we couldn't have imagined, especially when we had to take Asher for surgery. And just being surrounded by so much love and knowing that we have those people. We have amazing friends and just that social outlet. Just being able to go outside and have time in nature and reflection and all those pieces of self-care just embedded into moments. It's hard when you're so busy and dealing with all this but remembering to take those moments has helped me along the way. There's been a lot of hard days, but. There's been a lot of great moments too, and it's because of all those things.
Cindy Thompson: That's a great list and I think anybody, any parent can take a page from your book as to the things you carve out time for, because we can make all kinds of excuses why we don't have time to exercise or get outside. And yet if you see that as important, you're going to make time for it and I can hear it helps sustain you. Just creating space for that, or even dividing and conquering and supporting one another to do those bits of self care.
Nikki Holekamp: It really does. It's spring now, so I've made a conscious decision to take Asher outside every day because he loves it. It's good for me, it's great for him, and it's important to have him experience the normalcies of childhood, experiencing nature because he has at least one appointment today, and it's easy to have that appointment and get caught up in the day to day of other things but getting outside and getting that fresh air is it really just changes your whole sense of energy. So I think that's so important.
Cindy Thompson: Yeah I'm really glad you suggested that. I think that's a great reminder to anybody listening to grab a hold of those practices that help you just get that fresh air, get a sense of wellbeing. Nikki, as we wrap up today, I wonder if there's any final parting words that you would like to leave our listeners with, that would be some encouragement or words of wisdom for parents who are out there who are struggling, maybe have a child with a disability. What would you want them to know?
Nikki Holekamp: I would just want them to know that they know best and that their intuition is right.
My number one takeaway from this experience is do not be afraid to get a second opinion. And if you have a doctor that doesn't support you in getting a second opinion, then that's probably the wrong person for you, because it's your life and you are the one that's living it, and your child is the one that's living it. Making those decisions for you, you should be the one making those decisions and they should be helping you on that path, not hindering you. We have had a lot of that and I hope that Asher's story gives people the confidence and the permission that they need to get that other opinion and to take that next step and to do something scary and just never stop trying and never stop giving up. Never stop having hope.
Cindy Thompson: Wow. That's a perfect spot to land on as we talk about resilience on this podcast and the importance of hope. Thank you for sharing that with our listeners. Thank you for being here and sharing your story with us. I am very grateful that we got to get connected and to provide a platform for the benefit of helping others. And I wish you and your family all the best and I hope I get to meet Asher one day.
Nikki Holekamp: Thank you. Thank you for having us. If anyone wants to follow along with Asher's story, I'll send you his Instagram account. I try and keep everyone updated on there.
Cindy Thompson: I think we'll all want to follow him. That's awesome. Thank you Nikki so much for being here.
Nikki Holekamp: Thank you for having me.
Cindy Thompson: My pleasure.
Cindy Thompson:This family's experience is like finding the missing pieces of a puzzle. You might spend hours or days looking for each piece, keeping the big picture in mind, yet dialing into necessary details within this picture. Sometimes they fit together easily, while other times, you feel discouraged at the possibility of locating that piece. Imagine adding in an urgent timeline to completing the puzzle.
Hearing about Asher's story, I admire the commitment and determination Nikki and Mike have demonstrated. Knowing that early intervention is vital to Asher’s prognosis, I can only imagine the anxiety and stress they have been through.
Often, we only know what resilience practices we need once we need them. It is for this reason we are encouraged to cultivate the necessary skills, strengths and mindset necessary to respond well amid challenging times.
Nikki and Mike together may not have recognized the strengths they had until they walked through Asher's first 18 months of life. Drawing on Nikki’s go-to strategies for getting through hard days here is a selection of her practices.
1. One of my favourite joyful moments Nikki and Mike created is dancing parties. We used to do this with our kids, bringing back fond memories. We all, as adults, might benefit from more of this practice.
2. Going through this with as a husband/wife team and relying on one another's strengths has been critical to their well-being.
3. This leads nicely to having a community to support you. The friends and family surrounding this family are a solid asset for their resilience and well-being.
4. Taking time to go outside every day. Get fresh air, sunlight and breathe. It does wonders for our perspective and can help reset our moods.
5. Keep up those special moments; as simple as they might be, it helps for today.
6. Never stop trying, never give up, and never give up hope.
Nikki also shared wisdom she has discovered as a parent and occupational therapist. If you are struggling with a chronic illness or health concerns, remember that not all Drs are the right Dr. for you. Feel free to get a second opinion. I say this with the understanding that we are experiencing a shortage of Dr.’s across the country. But it is a reminder that you may need to become the expert and take your medical health care into your own hands.
As we prepare to wrap up this episode, I would like to leave you with this quote by Richard Wagamese in his book Embers: “Love is not always the perfection of moments or the sum of all the shining days – sometimes it's to drift apart, to be broken, to be disassembled by life and living, but always to come back together and be each other's glue again. Love is an act of life, and we are made more by the living.”
If you have enjoyed this episode, I invite you to rate and comment on your preferred podcast platform. This will help us to share the stories of amazing resilient people like Nikki, Asher, and their family and cultivate radical resilience around the world.
And remember, friends, adversity is inevitable while resilience is a practice.
Cindy Thompson: Thank you for listening to this episode of ‘A Resilience Project.’ We would not be doing this podcast without you. If you or someone you know has an inspirational story or is helping to build resilience in their community, please e-mail me at cindy@aresilienceproject.com. In fact, e-mail me either way. I would love to hear from you. My hope is to feature an episode periodically on your letters of resilience. I'm very interested in hearing your story of how you have tackled hard things and what worked for you. With your permission, I hope to share some of these stories along the way with our listeners. Also, check out my website, aresilienceproject.com to learn more about our amazing guests.
Your presence here is important because together we are cultivating a village of resilient individuals. You are creating a space for their stories to be shared and a sacred space for learning to occur. I also have a favor - I would love for you to go to your preferred podcast platform, rate and review the podcast so that we will know how we're doing. I also would like to express my gratitude to the amazing team of volunteers that have jumped on board to support this project. You will find each of those beautiful people on my website on the team page.
As you go about this week, I invite you to think about one way that you can continue to grow your resilient muscle. What is one thing you can start with today? See you next week.
HELPFUL RESILIENCE INFORMATION
Definition of Resilience
Capacity to cope with and recover quickly from setbacks, difficulties, and toughness; to adapt well to change; and keep going in the face of adversity.
Types of Resilience - how the body deals with change and recovers from physical demands, illnesses, and injuries.
Physical Resilience how the body deals with change and recovers from physical demands, illnesses and injuries.
Mental Resilience ability to adapt to change and uncertainty.
Emotional Resilience ability to regulate emotions during times of stress.
Social Resilience community resilience – ability of groups to recover from difficult situations.
Areas of Life or Situations That Require A High Level of Resilience:
· Resilience in Adoption
· Resilience in Adults
· Resilience in Anxiety - Depression
· Resilience in Body Image – Eating Disorders
· Resilience in Change
· Resilience in Children
· Resilience in Chronic Illness
· Resilience in Death & Dying
· Resilience in Divorce
· Resilience in Immigration
· Resilience in Non-Profits
· Resilience in Marriage
· Resilience in Parenting
· Resilience in Post Secondary Education
· Resilience in Pregnancy
· Resilience in Racism
· Resilience in Relationships
· Resilience in Suicide
· Resilience in Teens
· Resilience in Trauma
· Resilience in War
· Resilience in the Workplace
Traits, Qualities and Characteristics That People with Resilience Possess:
· They are authentic
· They adapt to change and see it not as a challenge, but an opportunity
· They make commitments and keeps them
· They feel in control – strong internal locus of control
· They have close and secure attachment to others
· They set personal or collective goals
· They become stronger with the effect of stress
· They learn from past successes and mistakes
· They view themselves as survivors – Survivor mentality
· They have a good self-image
· They are confidence in ability to make good decisions
· They have a sense of humor
· They have an action-oriented approach to life
· They have patience around people
· They have optimism in face of uncertainty
· The have Faith or some belief in a higher power
Ways to build Resilience in People
· Create more purpose and meaning in all that you do
· Develop a good support system – supportive network circle that they can engage for help
· Maintaining positive relationships
· Work towards developing good communication skills.
· Develop the capacity to make realistic plans and to carry them out
· Maintain a well-balanced routine lifestyle of diet and exercise
· Practice emotional regulation to manage your feelings, impulses and emotions
· Practice good problem-solving skills to rationally develop solutions
· Find ways to help others
· Set time aside for journaling
· Develop new skills to respond differently to situations. ...
· Turn setbacks into opportunities for growth. ...
· Maintain a healthy perspective. ...
· Maintain Proper sleeping habits
· Practice meditation
Organizations that promote and support Resilience
Resilience Quotes
Resilience Books
Resilience Courses