Rising Above the Challenges : How A Birth Trauma Turned Miracle : One Mother's Resilient Story - Nicole Smith : 109

Can you imagine the strength and resilience it would take to endure a 29-hour labour and then face the hardships of trying to conceive a second child? These are the realities Nicole Smith had to grapple with, along with the even more challenging experience of raising a child diagnosed with Cerebral Palsy.

Nicole is a dedicated advocate for human dignity. She has a background in Law and Public Policy and a successful career in Communications. In 2020, Nicole faced a life-altering experience when her daughter was born distressed and diagnosed with cerebral palsy. This intensely personal journey ignited her passion for advocating for her daughter's values and motivated her to raise her voice for those often marginalized.
 
 Her story is a stark window into the realities of NICU care, parenting a child requiring constant medical attention and trying to balance time and affection between multiple children. Through it all, Nicole's story underlines the importance of maintaining a positive outlook and a supportive community.

Nicole opens up about the emotional turmoil she endured as she navigated through her daughter's diagnosis and the challenges it brought with it. The daily life she lived of having to feed her daughter with a pump 24/7, closely monitor her breathing, and the continuous medical attention her daughter required. She teaches us the importance of grieving unmet expectations, taking moments to feel overwhelmed, and the power of sign language as a mode of communication for nonverbal people.

Nicole talks about her emotional exhaustion and the importance of having a supportive tribe in the healing process. This episode is a testament to a mother's strength, love, and resilience in adversity.

Driven by her personal experiences and desire to promote human dignity, Nicole founded Dignity Defense Institute, a non-profit organization.

Let's enjoy her story.

To connect with Nicole: https://www.linkedin.com/in/nicolemysmith/

Transcript

Daniela SM : 0:08

Hi, I'm Daniela. Welcome to my podcast, because everyone has a story, the place to give ordinary people, stories, the chance to be shared and preserved. Our stories become the language of connections. Let's enjoy it, connect and relate, because everyone has a story. Welcome my guest, Nicole Smith.

Daniela SM : 0:35

Nicole is a dedicated advocate for human dignity. She has a background in law and public policy and a successful career in communication and, most importantly, she is a wife and a mom of two beautiful daughters. Nicole, in this story, opens up about the emotional turmoil she endures as she navigates through her youngest daughter's diagnosis and the challenges he brought with it. She emphasizes the importance of grieving and managing expectations, while talking about the significance of having a supportive drive during the healing process and emotional exhaustion. Can you imagine the strength and resilience it will take to endure a 29 hour labor with the first child and then face the hardship of trying to conceive a second child, along with the even more challenging experience of raising her second child, diagnosed with cerebral palsy? This episode is a testament to a mother's strength, love and resilience in adversity, and I learn a lot thanks to her story. I am grateful for that. So let's enjoy Nicole's story.

Daniela SM : 1:47

Welcome, Nicole, to the podcast. Oh, thank you so much for having me on. Yes, I'm excited that you're here. I really was dying for you to come to the podcast and then, when we have an initial conversation, I was fascinated by all the things that happened to you, so I am happy that you're here. Besides that, I ask you to please come to the podcast. Just tell me why do you want to share a story?

Nicole Smith : 2:10

Well, twofold, I would say one for an empowering measure for someone else going through a similar circumstance, and then two, an awareness of what can happen throughout our story. That becomes a little bit more apparent. But those are really the two reasons, so that people know that they're not alone in our maternity. It's very difficult, but when you have special needs situation, that's kind of next level, a life experience. So an encouragement as well as just an awareness.

Daniela SM : 2:42

Yes, and I appreciate that because it's true, people don't talk enough about that. I mean, I do believe that everybody has their own experience, so you can hear millions of advice, but everybody goes through the different things, but you're always good to hear others.

Nicole Smith : 2:57

Ours is a unique enough story that there still are a lot of people out there that have gone through something similar just an awareness and empowerment.

Daniela SM : 3:05

Yes, and I know that what you told me before is quite incredible. When does the story start?

Nicole Smith : 3:11

Well, I like to start the story entry into my maternal story. So I was about almost 30 years old when I gave birth to my first daughter. I really say I just really didn't understand what strength meant until I gave birth to a human person. It's pretty wild. I had a 29-hour labor with her and, unmedicated, pushed hard enough where I burst almost every blood vessel in my face. I got up an hour later and I'm walking around and going, wow, like this is so powerful. I know that not everybody chooses that path, but I just thought, well, if I can do it, I will, if not, I won't. And I couldn't believe I got through this really massive show of strength. I kind of say it was like entering into a world of Oz where everything was black and white before, and then entering into a world of Technicolor. I just and I know that sounds exaggerated, but really it was this idea that how strong that I was as a woman, that I could do this really phenomenal thing, and that really anything else I did, I could say, if I didn't succeed from my perspective of what success looked like, at least I had this, I was powerful and it was very an impactful story and moment for my life.

Nicole Smith : 4:28

So about a year into my first daughter's life, we decided we wanted another one and we thought, well, this is going to be just as powerful and wonderful of an experience. And it turned out to be a much different experience than the first. So I started to experience a physical ailment that would allow me to. Well, I was in immense amount of pain 24 seven for three years straight. I was tied to my fertility and that kind of stuff. So I wasn't able to conceive a child for a long time.

Nicole Smith : 5:01

Once I was starting to find solutions to it, I then I started having a lot of miscarriages. It took me about three years to conceive my second daughter and that was also very impactful. We were very grateful, very scared, like pregnancy wasn't all that complicated, I wasn't considered high risk. This was coming into COVID. That world made things a lot more complicated than it ever should have been At that time. If anybody is really aware of, in the medical realm, what it meant to be pregnant during that time was, you know, telehealth visits, parking garage exams which I just felt so bad for the nurses and the doctors at this time, you know, not able to work in a clean and proper environment, everything was just such a weird, weird time.

Daniela SM : 5:47

But I mean you said you feel bad for the doctors and nurses. What about you? I mean I don't think that one expects to be checked from that. You know private areas in the parking lot.

Nicole Smith : 5:58

Yes, yeah, well, yeah to to like go in behind these little screens, and that was part of our story too. I actually didn't have all of my tests and stuff done in time for me to go into labor, so a 27 hour labor. I was touched very few times because they didn't want to introduce an infection into our system that would affect me or the baby. I would be checked at around 27 hours when they were starting to realize that my daughter was in distress. The nurse had been coming in and out every once in a while telling me like hey, roll over on your side, okay, fine, I'm like, okay, just labor and along. Finally she comes back in the room with a physician and the doctor says you know, look, I know we haven't checked you, but I feel like it's really important that we check you now. I was like, okay, she reaches her hand up in there and I don't have an epidural understand. So what occurs in the next, like 10, 15 minutes was all I feel, everything. She goes yep, oh, my gosh, you, we have a prolapse cord. All these alarms start going off. 20, 30 medical professionals rushed into the room. I have no idea what a prolapse cord is, I just know clearly this is bad. So the doctor jumps on the gurney with me, the nurse jumps on the gurney with me. I'm looking around, an absolute terror, what's happening? My husband's like okay, just like two seconds ago we were quiet and now everybody's rushing to the room. They're screaming to cover me up because I clearly very exposed and we're about to go into public areas. When you're in labor, you know you're like modesty goes out the window. But I was kept thinking of that. Poor dad in the lobby was just trying to get a cup of ice for his wife. That's the woman being used as a human ventriloquist puppet because her arm was still up inside me, trying to keep the baby off of the cord. So a prolapse cord, just for reference, is when the cord comes out and advances the baby and it gets pinched off, so the oxygen flow is cut off. Essentially it meant that my daughter was suffocating to death. You know, has her hand up there, keeping the baby as much off the cord as she possibly can.

Nicole Smith : 8:06

They run me into the OR as quickly as possible. They put the mask on me and I'm breathing, but at this point, like everybody's, like pulling my limbs every which way they're shoving catheters in me. Remember I can feel every inch of everything that's happening to me. I remember just like starting to ask everyone what their name and their job was, because I needed something to ground myself. Like what is happening, getting all these names, and one anesthesiologist sort of takes pity on me. She sees this single little tear run down my face, like what is going on. She goes you know I can tell you're really overwhelmed. You know we do this every day, honey, like you're going to be okay. And I was like but I don't have an epidural. What are you going to do? Are you going to rip her out of me? She said no, dear, you're going to be put under general. So, which means you get knocked out.

Nicole Smith : 8:56

Within like 10 seconds after that sentence I was out like light and when I woke up, I woke up in recovery. The issue with having no epidural and going into general means that you come out immediately feeling everything. So you feel that you've been cut open. There's nothing to like stem the tide of the pain.

Nicole Smith : 9:18

They started putting me on narcotic pump immediately, but it's kind of like you're chasing the pain and you never quite meet up with it. So I don't deal the well on narcotic at all. So I was loopy, I was crying and begging my husband to tell me where the baby was and what happened, just totally out of my mind, had no clue what was going on. I guess we were there for about three hours and they never brought the baby back. We kept waiting and of course my husband has more solid grounding and time than I did at that time because I'm just out of my mind. Finally, after about three, three and a half hours, they bring her back to me and they acted like everything was totally normal. They bring us into labor recovery Almost immediately. We started noticing something very wrong, but it would take them four days to take it seriously.

Daniela SM : 10:15

With my daughter.

Nicole Smith : 10:17

With me. Obviously I was in an immense amount of pain. I felt everything. The pain medication never quite caught up to it. Every time I moved it was like being torn in half. It was excruciating. Remember, I gave birth to your child before 29 hour of labor. I felt really intense pain before, but this was like next level I've never really quite experienced.

Nicole Smith : 10:41

The first few days we started to notice things like her eyes used to roll back full whites in the back of her head and she used to oscillate like she was having these massive seizures. That's when she was awake, but she was rarely awake. She was often really asleep and newborn sleep a lot but her. It was kind of almost like impossible to wake her up. Then she couldn't actually latch when I was trying to nurse her or suck, swallow none of it. She didn't eat for quite a few days.

Nicole Smith : 11:06

The response to the emergency was great, but the doctors afterwards it was incredibly frustrating experience. Our nurse kept going. Well, she has to drink X amount of milk at a time. They weren't giving me any resources, that were just desperate to try to get her to eat. The doctor would say we could go home and then they said that we had to stay and then we could go, and then they say that we had to stay. It was just these crazy back and forth every half day. When they finally made the decision that something really was wrong, they weren't aware of what it was, or at least they wouldn't tell me what it was. I remember very distinctly this is COVID time, so there's like coffee is very hard to come by breakfast sandwich. That's not like hospital. My poor sweet husband was like I'm going to find you like a solid cup of coffee At this time.

Nicole Smith : 11:58

They had taken my daughter away to do some testing, so I was totally unaware it was happening. I was just scared. So he left. And then, sure enough, like this massive team of doctors came in and it was like the primary physician that we had been working with, several neurologists and this other lady that had been standing in the back of the room for a long time. They never told me who she was. So they kept going through these lines questioning, and I'm like my husband's not here, I'm kind of freaking out. And finally they point out the lady and she kind of comes forward and gingerly tells us that we're not going home, that we're going to go into intensive NICU for extensive testing to find out what happened. My husband comes back in the room coffee's in hand, like what is happening? I'm like I don't know. We're not going to be able to go home. Also, nicu meant that my husband wasn't allowed to stay with us. He was allowed to walk us to our room, but then he had to leave the hospital promptly. One very important detail at this time in our journey was that I stopped taking all medication whatsoever because I was afraid of giving any type of narcotic or any strong medication in my breast milk to her. To make the hyperlithargy worse, I was at this point just cold turkey.

Nicole Smith : 13:14

The reality of high intensive NICU is that you don't have a bed to lay down in. What you do is this tiny, very full room of all the medical equipment you could possibly imagine and a tiny little seat in the corner. That is where you stay. Then at night, around six o'clock, your name has been put into a raffle. This raffle is you're drawn to see if you're allowed to get a hotel room. I say that very, very loosely. It's just a room with a mattress on top of a box I'm literally meaning a box with one blanket on it. You get to stay there until the next morning around eight o'clock You're told to remove your things and then you have to go back to that tiny little seat in the corner.

Daniela SM : 13:59

It's not a hotel room, it's just a room.

Nicole Smith : 14:01

Yeah, they call it like a hotel. It's supposed to be set up like one. It's not. Having not been on pain medication, it was very difficult to sit in that corner all day and not really have much relief. Of course you're just terrified of what's happened to your child. They're not really telling you very much. They have this long list of things they're testing for. I asked one very nice NICU nurse please write down all the tests you're doing and for what purpose you're doing them. She did. She took the time, wrote out every test and for what purpose it was. I was able to check it off.

Nicole Smith : 14:38

My routine was I stayed in the room until about 10, 11 o'clock at night with her. I'd take a break around eight to go shower and then come back. There was always a neurologist that would do his rounds around that time. Then I'd wake up and I would do it again. I get there around 6.37 because there's another neurologist that did pre-rounds and I had my little system. I could just guide the process. Then, after about a week we were transferred to long-term care, which then you're allowed to have a little bed in the corner like a seat roll out seat. We were there for about a month.

Nicole Smith : 15:12

They never, like I said. They didn't tell me until I was eavesdropped on a nurse transition. They'll do patient debrief, like their medical history. Holding my hands next to the door, pretending to do something productive, I'm listening to the nurses say that she had been resuscitated at birth. I had no clue. My husband hadn't been there so obviously he didn't know. I wasn't awake for it so I didn't know. I guess she had totally stopped breathing. What confirmed that she had actually been resuscitated at birth was an insurance bill, a hospital bill that said $746 for resuscitation and newborn infant.

Daniela SM : 15:54

Then you have to pay or I had to pay that.

Nicole Smith : 15:57

Oh yes, some of it had been come off from insurance, but that was a line item in the billing system. That that's how I found out she had been resuscitated at birth.

Daniela SM : 16:10

When you were sitting in the room and you go by lottery if you were going to go to sleep or not. So if you didn't get to that room, where did you go?

Nicole Smith : 16:17

You're home, a hotel next door if you don't live close by, or you can sit in the chair if you'd like.

Daniela SM : 16:25

Oh, so you get to go home.

Nicole Smith : 16:26

Yes, you could go home. Yeah, honestly, it was actually really sad, especially in intensive NICU. These children that have been there for a really long time and their parents live in other states and have other children and jobs they have to maintain. A lot of the kiddos are alone. Sometimes it's neglect to. Unfortunately, these kids don't always get the care they need from their support systems. You could tell the families that were really a lot like us.

Nicole Smith : 16:54

Eventually I was able to start changing out with my husband. We had COVID rules. You had to be there for X amount of days and then you could switch out with someone else so I could go home and actually sleep in a bed. After a few weeks I started to notice certain families did the same thing, like the husband would come and tend and then switch every few days with the mom. There was a couple moms like me that were pumping and sending their milk in to make sure that they were supplied. But I had one of these cleaning ladies. Just sweet, sweet lady told me how grateful she was to us for always making sure our daughter had someone to love her and take care of her, because too often she goes into rooms and these children have no one to hold them or to love on them.

Daniela SM : 17:37

Wow, that's so sad.

Nicole Smith : 17:39

Yeah, I had to routinely walk around NICU both my husband and I when any day we were there and look in the rooms and just pray over each child for their health and their well-being in there, because we knew actually a couple of our friends prior to the situation had lost their babies. We knew what a blessing it was that we were here and I know it was hard to see that as a blessing in the moment, but it was so easy that she could have died the day she was born and we know what it had felt like to walk through those moments with our friends having to bury their babies, that it was something that we should be grateful for, to pray that blessing over others in the same situation.

Daniela SM : 18:23

But that's beautiful, because you were focusing on the positive rather than the negative.

Nicole Smith : 18:28

Yeah, which, like I said, not easy. There was a lot of moments of bitterness. That's totally normal Part of her cares and I'll bring back to that. That journey of bitterness and what I call opportunities for grief are really, really important. So she was there for a month. She was never able to self feed so we had to get a gastric tube inserted, which is they puncture a wound through their abdomen, attach their stomach to the abdomen wall and put a little tube in through their stomach wall. So it totally bypassed her esophagus because milk was just going straight into her lungs. Pneumonia, death that's basically the alternative. Once we finally got that inserted, we were cleared to leave.

Nicole Smith : 19:12

All the medical stuff became my stuff. It's in a nurse doing it, it was me doing it and I don't have a medical background. I struggled with it a lot. She had to be fed by a pump 24, seven, basically, like at night she would be hooked up to a milk pump and it would pump into her system and we had to get up every so hours to refill those things. She had to be monitored to make sure she was continuing to breathe and not aspirating and those kinds of things.

Nicole Smith : 19:38

She stopped breathing a lot. That was a very normal daily occurrence where she would just stop breathing, turn purple blue and then I'd have to shake the life back into her, basically over and over and over again. It's very common where people are like my kid choked on a piece of chicken that one time. That it's scary, scary, but that was literally my everyday. A lot of that bitterness came up because there's just so much fear and uncertainty that got through this really hard thing. You're thinking you're on the other side of it and every day just brought another level of trauma, day after day after day. It was hard to handle and again, I don't have a medical background but, as I am to understand, even if you are a doctor or nurse, if this happens to your kid, it's still difficult. It's hard to handle that as a reality. Of course, yeah, there's often this thing that is spoken over parents in a similar situation In mine, my daughter was 100% normal until we had an accident. It's more seen like an accident in that which she is 100% not normal anymore. So her diagnosis is called cerebral palsy, which is essentially ischemic brain damage that comes from a lack of oxygen that affects muscle control, and muscle control can be anything every muscle on the body, including the esophagus, your ability to swallow, your ability to talk, your ability to walk, your ability to anything, because we actually have muscles that do a lot of different functions that we just don't really think about. There's a lot of question marks with cerebral palsy. Every person that has this totally difference.

Nicole Smith : 21:11

I remember getting this poem spoken over us a lot. I guess it's very common for families that have children with disabilities and it's this idea that you planned a trip to France and you ended up landing in Denmark. So you have the expectations of France the sights, the sounds, the food, that experience is what you have your expectations on. But when you land in Denmark, it's still beautiful, it still has wonderful food and wonderful. It's just slower and it's just a different world, different experience that should be seen as beautiful, just as beautiful and in a lot of ways that's very true.

Nicole Smith : 21:49

I don't think that I appreciated that poem being spoken over me as much as they were.

Nicole Smith : 21:55

People were just kind of like you should be grateful, be grateful, your baby is alive, your baby is breathing, and I was just like I am grateful. I'm so grateful, but I'm so bitter because I have to be grateful because there's breath in her lungs when it's so easily not in her lungs, because that was my daily reality. It was just hard to tell people. I don't think you understand what we're going through. I know what your intentions are, good and pure, and you want to encourage me because our life is beautiful, but it's really hard. It is, like I said, going back to encouragement to families going through this, I would really encourage you to take those moments in which you feel overwhelmed and you want to cry, to cry, to sink into those moments that make you feel overwhelmed, because those are opportunities to grieve, because you need to grieve that you did end up in Denmark instead of France. It's okay that your expectations weren't met and really what we're grieving is unmet expectations. That's really what it is.

Daniela SM : 23:02

I feel like when people tell you you should be grateful, it's more sympathy than empathy, because they are telling you there that you should be grateful for what you have. Yes, okay, but why can't I not have more? Why can't I not expect more? Why can't I not feel better?

Nicole Smith : 23:16

You'd want that, but it can't be something that keeps you in that cycle of grief Like grief is very important and it's something that's a healing mechanism that you're supposed to sink into and to bring you relief and growth out of that To not let people tell you what your journey is supposed to look like, because it is a journey. I have other friends with children with cerebral palsy and one of my really close friends. Their birth story is very similar. Hers was tied to a medical event in the womb and so hers is a much more severe version of our daughter's cerebral palsy. She's 16, so my daughter's three Definitely different parts of the journey because they've had many more years to get used to, to heal, to adapt, to see this new reality that they're in as something that's deeply beautiful and purposeful and impactful. But the mom she says she gets so upset about people posting pictures of their vacations because their daughter's in a wheelchair and she can't go to the beach and she can't do certain things. And it just reminded me how much this is a journey and there's certain things that just like sort of hit your heart in weird ways. It just depends on the person you know. Like we were saying, it's very unique experience.

Nicole Smith : 24:31

I remember when we were in NICU the nurses do this wonderful, very sweet thing where they make these beautiful signs with your daughter or son's name and they decorate the doors of your the NICU room. And I was so mad about it not at them, but I was very upset because it meant that she was going to be there for a long time. When they moved her to a different crib, from her original crib to a different crib, I got very upset with that too, because it meant she was going to be there for a long time. That now that bed was needing to be used for a child that was newer, my husband kept going.

Nicole Smith : 25:09

You know, nick, like this is a good thing. You know you should see this. I'm like I just can't see it like that. I just didn't want to see it like that. And again it's. You have to grieve through those moments and sink into those feelings, you know, recognize the source of that discomfort and then do something with it, don't just sit in it forever. But yeah, it was just funny, my husband, he had different things that will sort of trigger those hard moments for him. You know he's like I don't even get why that's upsetting to you. I'm like it just is to me. For one reason or another. It's been an interesting journey.

Daniela SM : 25:41

But it's interesting that you talk about grieving, because you know we always talk about grieving when somebody dies, there is, like you said, when you don't have your expectations. Grieving is a word that you can use. You know in more regular races how to deal with that, because you do have those feelings, as you have some feelings that upset you, what your husband didn't have, other ones and we all different things, different things affect us, right, and it's important that we kind of acknowledge and respect it and honor it and then, of course, get the proper tools to move away from that, because you don't want to be in a negative spot, absolutely yeah, but that's the difficult, that's the work, yeah, yeah.

Nicole Smith : 26:24

I mean, this has been my life saying for really ever expectations of the death of joy. You know, interpersonal relationships often become tumultuous when someone doesn't meet our expectations, and so realigning our expectations to what that person is able to accomplish makes things much able to accomplish joy in those relationships. I've just noticed that throughout my life, like with our children too, you know, if they're health journey, she didn't meet our expectations. We thought that life would go a different way and our expectations weren't met. Something else came out of that that was not easy to find joy in. But when we realign our expectations to what our children are capable of producing for us, like our daughter, we fully expected to never eat on our own or ever speak or to ever walk, to stop comparing her to another child that can speak and eat and walk, because she will never meet our expectations if we keep comparing them to other desirable outcomes. And that way you can celebrate the things that are about her. And I do that with my other daughter too. You know I tried very hard to look at her because she's her own sassy little self to go. Sometimes it's my expectation that I'm placing on her that she's not acting within the proper order of what I believe is right. Sometimes she's just her, and so just trying to keep that and infiltrate all parts of my life, that reality that sometimes my life's expectations won't be met, but it still doesn't mean that it won't be joyful, it won't be purposeful and it won't be loving. My life with my girls, my life with my youngest daughter, absolutely is. It's transcendent joy. I'll say it that way.

Nicole Smith : 28:10

I, going back to my friend that has a child that's similar to mine, he said you know, we have our lows are really low, but our highs are really high. And I think it's true. It's like they don't have to meet our expectations, they can just be the fact that they live and our breathing is just a beautiful, wonderful thing and we get to celebrate that and I get to advocate for her and find joy and pursuit of making her life the best life she possibly can have. It's been a hard journey but it's been a beautiful one that I would like to encourage other people in and also to again going back to awareness. Awareness this things can happen Awareness of families going through something similar and maybe to choose different words when they're encouraging those families no, you can't speak in empathy, but something that, in sympathy, is to just do life with them.

Nicole Smith : 29:04

Don't try to fill it with words. Maybe just ask them what they need. Like us, going through this and COVID meant that nobody could bring us food, nobody could clean our house, nobody could do really much of anything for our family. As time passes, people forget that you're still going through a really hard time. So maybe a friend is two, three, four, five, 10, 20 years into it. Remember they're still going down that path. They're still on a journey. Bring them a meal or offer to take their other kids to the park for a while, or see people in their journey and try your best to empathize and be present with them.

Daniela SM : 29:41

Yes, this is something that we are not told right, I will feel awkward, I don't know what to say. I will feel awkward to tell you anything about my kids because it could be all happy. And then I don't want you make you feel bad and I guess you also walk away from your regular friends because they really don't understand, or you don't want them to feel comfortable, or they don't want to feel uncomfortable. So how was that journey too?

Nicole Smith : 30:09

Yeah, actually that's a wonderful question. So I did have a season that I kept trying to pursue. People try to plan things and because I felt so alone Again, probably COVID made it worse People just kept not showing up, and not showing up, and not showing up. It was hard to continue to be rejected, felt rejected every time that they had something else that was scheduled conflict, and I know they probably didn't mean anything by it. But I finally got to the point where I just had to cut off energy output for those things. That couldn't be a two-way street.

Nicole Smith : 30:42

My hope was, too, was to build enough stronger relationships around individuals that could be a part of our journey, so I didn't have to always explain what was happening. Sometimes that's hard because we go out in public and my daughter is nonverbal and she walks in a walker. People are constantly asking what's wrong with her. Nothing's wrong with her, like she's just her, and sometimes I'm okay with those questions. Sometimes I'm just tired of answering those questions. I was trying to build a tribe that I didn't have to explain it anymore. We could show up, our kids would play together the way they could. I didn't have to explain anything anymore and in some ways I did build those relationships. Their kids are typical kids and we can show up and we can play and they celebrate her victories and they pray over her challenges and those have been great.

Nicole Smith : 31:33

And then I just sort of cut off all of the other ones. That was just too hard to get them to understand where we were and then to treat the questions that people had outwardly as opportunities to educate. And it's mostly kids. They're like hey, mom, why she got wheels? Or confusion over why she doesn't verbally respond. But she does ASL, american Sign Language that she understands what you're saying. So speak to her just like normal. I might translate for you. But to speak like she's a normal person because she totally understands what you're saying, don't expect her to answer normally. You know those sorts of things. It's been interesting to navigate those pathways.

Daniela SM : 32:13

I mean, I don't think I will have asked the question because I think it's impolite. You telling the story, you are making people aware of something that they don't know. Right, yeah, they see somebody else or they see her. They know what the story is. The question is more what's your story rather than what's wrong with you.

Nicole Smith : 32:30

Yeah, what's wrong with that kid? It's kind of fun to make people realize to sign language is not just for someone who is deaf or hard of hearing. That's been one of the biggest education points we've had, because the assumption is there are nonverbal people that you use sign language as their primary mode of communication and you know she's a strong little girl. It doesn't make sense why she would have to be supported in the way she is. But she has a balanced disorder so she stands independently. She just flops right over.

Daniela SM : 33:05

She's three and she's great at sign language already. Yeah, that's pretty good, she's amazing.

Nicole Smith : 33:09

Actually it's very common, like with her age, to do what they call augmented communication. It's like a little iPad or pictures that they can point to you to tell what they need. Well, I started doing sign language with her really really young, because I realized her comprehension was really really high. She understood what was going on. Cognitive capability she was always like a year ahead of as she tested. She was always like a year ahead of her age. So, around one year old, she screamed all the time because she was frustrated, because she wanted to tell you what she wanted, but she wasn't able to tell you what she wanted.

Nicole Smith : 33:45

Everybody does like a little bit of sign language with their kids before they can speak and I was like, okay, well, why don't I just learn it and we'll just learn it together? And so now she can form small sentences like a three year old would. It's helped a lot. She still screams a lot as compared to another child. It's easier to go like make a loud noise to get my attention and then to look at me, that for me to look at her so she can tell me what she wants. We don't have to yell. I always say we use our hand words. You know no yelling, don't yell at me.

Daniela SM : 34:18

But she can hear. Okay, so she knows that she's screaming. Yeah, oh, she does.

Nicole Smith : 34:23

Well and that's the weird thing is too, we'll be in public and I verbally translate whatever I'm signing in my in words, because mostly it's an encouragement for one to teach her, but also to encourage her to use her words, because somebody else is speaking to her that way, because she can hear. So people are kind of like they watch us for a while and then they ask can she hear? I'm like yes, you're just fine, it's just she. Her muscle control in her mouth makes it. Where she can't actually form words in order to speak, her vocal cords work just fine. It's the muscles that control them that are the problem.

Daniela SM : 35:00

So yeah, well, I mean, she's three and that's difficult times anyway, so it would take some time. Can we go back to the expectations point? I seem, from your background and your job, what you used to do on a note, you still do it. You probably have always have expectations for yourself. How do you learn to perhaps lower them? Or which sounds negative already? So how do you better work, direct them, change them, modify them?

Nicole Smith : 35:31

I love that question Like that's one of the best ones. I think a lot of times too in this process it's so much centric towards your child and meeting their needs that sometimes you forget you're part of this process too is giving myself more grace. I still do that work. I'm still do human rights work. I've learned to try to build a life in which I can create almost like silos a bit, so that I can step to the side and be something fully, so that I don't get too much cross contamination.

Nicole Smith : 36:04

I get overwhelmed and then I start losing all ability to organize anything and I will fail understanding that something will fall through the cracks. Like the other day I accidentally my daughter turned eight my oldest and I got the party time wrong. I put it down for one and it was 11. And so 45 minutes into the party I get a call from the company like where are you? And I was like okay, everybody run, run. You know, like simple things like that, like and I cried. And I cried and cried because I felt like I wasn't being a good enough mom to my oldest, because everything goes into my youngest and this one thing I was supposed to get right so that she felt special and important.

Nicole Smith : 36:45

Thankfully, all the moms were so sweet, you know. They ran, we had the party and then we went back to our house and ate pizza. It was fine, but I remember having that like sitting in that moment going reduce expectations for perfection for myself. I will fail. I will do something to not meet my family's expectations, because I'm a person and I'm human and I'm my worst critic when it comes to that. I'm never supposed to let anything drop and for as many places I have spinning, it's okay that some will drop and some will break. I can pick myself back up and it'll be okay, you know.

Daniela SM : 37:23

And we build these expectations because we can do it. We have done it, we can do more, so we added it is interesting what you said, and it's also interesting what you said about your daughter and feeling frustrated. It happens Somebody else is taking more time of you than the other and you want to be fair, and fairness I guess it's not the word anymore, it's more equity. You know you take the time that you need for everyone instead of equality.

Nicole Smith : 37:45

I've noticed a challenge. My oldest daughter has always had very defined views around what she believes how the world should work. Because there's a five year gap in them a lot of the times it's hard for her to comprehend that. We did a lot of these same things with her early on. She's old enough now that she's like hey, you know, you're like spending a lot of time with her and I go well, I take about 30%, let's. It's like a normal baby.

Nicole Smith : 38:13

It's a lot of work just to do young children. Of course. She just doesn't recognize it because she doesn't remember that we did all those things with her too. So she always says, well, you never, and you never do this with us. And I was like, look, and it was kind of like training her in in expectations as well. So you're placing a lot of expectations on mommy and daddy and the season that we're going to fail to meet them, unfortunately and it's it's not intentional, it's just that a lot of this time is taken up by the medical needs. I want you to express those expectations and let's talk through them so that we don't continue to have bad feelings around us not meeting them.

Daniela SM : 38:52

Oh, that's a beautiful conversation.

Nicole Smith : 38:54

Oh man, it's, and it's been, it's been a thing. Part of my daughter's condition is that she wakes up a lot throughout the night, so I haven't slept in like forever. You know shorter fuses with that, so just verbalizing like look, mommy hasn't slept in like like years. Some days are worse than others. I'm trying to walk her through, aligning expectations and giving grace to, because she she needs to learn that as well. Earlier on the better, I think.

Daniela SM : 39:23

Yes, yeah, that's true. I have a story from somebody who also he works on managing expectations and he works really hard on that. He written a book and also writing a course.

Nicole Smith : 39:34

Yeah, yeah yeah, well, and to express meeting those expectations isn't a transference of love. My oldest has a hard time recognizing an equity in love Like that. Like there's only, like a like physical space in your heart that is dedicated to each hers must be so much bigger because she's getting so much more of your time. No, like, that's not how that goes. You know it's. You know, of course, you know she's younger, so there's more time anyway. But yeah, we love you equally. It's just you have different needs that need to be met and just trying to be purposeful at the time that we do give her to make sure that she does know like, hey, you know we're boring into you specifically and your needs and that kind of stuff, and we know over time it won't be as bad. It's just she has a lot of extra needs, are youngest right now. That will get through and in the grand scheme of their life won't be such an intense amount of time spent where it's just like my oldest is forgotten. But yeah, it's, it's hard.

Daniela SM : 40:30

She will know that you have done the best you could. Yeah, yeah, you work on human rights and here we are, you advocating for your daughter. It feels like you are having a double purpose with your profession now.

Nicole Smith : 40:42

Yeah, I say that my mission was given flesh and blood when she was born. I grew up in a home that was very service centric, so when I grew up I ended up on the communication side of global human rights. I helped a lot of people in other countries that I never got to hug or touch or tell them that they were important and loved and special enough for people to show up and serve them because they were important just because they were human. You know no conditions right? There's a struggle in that because I don't get to physically tell them those things where when my daughter was born, I felt that physical connection obviously, where I got to tell her those things I didn't get to tell that child bride in Uganda or that sex slave in Afghanistan that I was advocating for it's. It's been wonderful to see those things come full circle and it's become just a more enriching journey, even in the professional side.

Daniela SM : 41:35

Yes, she's three. But apart from that, when she grows older, would you have more time to sleep? Will you have more time for yourself Things?

Nicole Smith : 41:44

change a little bit, I think. So, yeah, it will. So the thing with her and again, cp is so different. If you get early intervention, things can really improve pretty rapidly. If, depending on the person, right, you know early on we thought you know she'll never do out any of these things. We have really pushed very hard for that early intervention. When the neuroplasticity is really high, when the brain can adapt.

Nicole Smith : 42:07

It's looking like my daughter will walk. It will look like she will talk. She will get through these things. It's just a matter of when. It could be 10 years from now, I don't know. It could be 20 years from now, I don't know. Or it could be five, I don't know. So you just have to take one step at a time and realize that work on the front end will increase quality of life for her in the long run. If we try to push it back and do it older, your neuroplasticity goes down as you get older, like your brain has a harder time to adapt. Really where we're at, we're just like we're trying to find those pathways. Like you will walk, you will talk. We will just pour into you as much as we can and the hope we can all sleep one day.

Daniela SM : 42:50

And Nicole, what about the relationship between you and your husband?

Nicole Smith : 42:54

It was a struggle. I'll be very honest. My husband, he went through a really hard time about a year ago. We're just really kind of digging into his mental health, his physical health, all of that sort of stuff, to try to come out on the other side and I would say it was really bad for a good year in there. But now we're coming on the other side of it.

Nicole Smith : 43:18

I think the divorce rate for families like in our situation is ridiculously high and it's mostly men that will initiate the divorce in the instance of infant trauma. Oh really, yeah, I mean, when you go through this it's really hard and in general like my husband not really including his own trauma from when he was a child just in general it's really stressful. The relationships tend to break down because there's just a breakdown in communication over just everybody being in such a bad space. I mean, I remember having quite a few arguments about just silly things where he would say things like I thought you were past this, like it was something that I was struggling with, with the reality of what we're in. How are you past it? Of course you're not past it. He's just trying to emotionally put it under the rug, right? So being very purposeful with coming to the forefront with how you're your feelings about stuff, and it was important we got stronger in our relationship.

Daniela SM : 44:19

I feel like oh, and what about shame? I mean, I'm sure that he's there.

Nicole Smith : 44:24

Yeah, that actually was a big part of our early journey because there was a lot of what-ifs like what if we had done something different? The birth process it's so different, depending on every single birth, but so many variables were so different than my first one because of the fact that it was COVID and nothing was normal. But I had a deep amount of shame concerning some of the choices during that birthing process, like I should have known. Of course I wouldn't know, but maybe I should have taken some advice differently or I should have. Really, there's any moments like these. There's always something that you could have done different, and so it took me a while to just come to terms with. Things were just going to turn out the way that they were. I'm just going to have to be okay with that. I can't be angry at the situation anymore and I can't be angry at myself anymore for how things turned out, because it's hard to watch your child struggle from something that could have been different, prevented. But I'm not a physician. I wouldn't have known.

Daniela SM : 45:24

And your family, your relatives, your mother, your father. How did they handle it?

Nicole Smith : 45:29

I always find it so interesting. The way people respond to trauma is so unique. My mother for a year wouldn't hardly touch my daughter because she was afraid of hurting her. It's hard to feed a child with a gastric tube. It's just, it's very unnerving. You're hooking up to a pump that might get clogged and where we started feeding with syringes and she stopped breathing all the time, like when she was really young. She just stopped breathing every few minutes, like it was really frequent. Her response was just to not touch her at all. So one day I think she was like a year, year and a half was like mom, your granddaughter needs to be fed. If you don't feed her, she will not be fed. And so she was like you're awful, nicole. I was like, look, if I go into the hospital or my husband goes, like somebody has to be a backstop here, you know, and you guys live the closest you're going to have to get over it. And my dad was very similar, like he used to be a paramedic and he still wouldn't touch her. He was just so afraid of hurting her. Yeah, oh, wow. And my dad's response was denial for a while. It's just an over exaggerated response to nothing. He's like he wanted it to be, that my mother-in-law just never slept. She was just terrified all the time that she was going to die. My father-in-law was like she's going to be perfect and fine and like he just had his predictions. Yeah, and it's just like interesting to like watch people's response to what I called the hurt baby, and everybody came to a rescue in some way that they felt like they could. You know sister in laws, brother in laws, aunts, uncles. You know their own response, the way they knew. I found it to be a sweet process to watch, you know, sometimes frustrating, but when I looked at it like, this is how they're processing what happened, coming to terms with it, and I felt it as more of a beautiful thing than it was like with my mom, where I'd get really frustrated. Like mom, you got to get over it. Like I had to.

Nicole Smith : 47:30

People say like trauma and bad things happen to people that are strong enough to take care of it. I don't think that's true at all. I think that you respond to it and you can either run towards it or run away from it. Running towards it, it means a lot of hardships and a lot of ways, but, man, you get so much stronger. It's like I would never change it for the world, like if it meant that she was dead. If I could get the other alternative in that situation, I would take this any day of the week. She's alive, she is her best self. Would I wish this on her if I could avoid it altogether? No one, every parent, would ever wish this on their child. Of course not. But if I had to choose between two scenarios of it happening dead or alive I choose alive and I choose fighting for and I become stronger and more resilient and more grateful and more just, better. I feel like my heart is more full because of it.

Daniela SM : 48:26

And you're tired, more tired.

Nicole Smith : 48:28

Oh, so much more tired and I'd encourage people to get that tribe that understands. I kind of go back to that friend that has a daughter that's older. It was so nice for him to understand that when you show up to something, you're already exhausted, he gets it. It's like that tribe that understands that you don't have to explain what's happened, all the things that are invisible to everyone else. They get to just see this right here. She's smiling, she seems happy and well adjusted, but there's a lot of stuff behind the scenes that doesn't get to be seen Sometimes. I'm grateful for that, because we don't always want to show our grittier side. Other times I wish people could, because they could understand a little bit more what goes into making the person that's standing in front of them. There's so many things that are hidden.

Daniela SM : 49:23

And you know, I understand what you said about staying with a tribe, because I think, in a way, we always want to be with people that our brain says is similar and easier to understand in all kind of levels. But, however, I also think that you exposing yourself to other people, people that are worth to be with, because not everybody has that that you will help others to grow in situations that they wouldn't know.

Nicole Smith : 49:50

No, I agree with that. I'm more meant for the sake of coping with those aspects of your life. Sometimes it feels good to feel seen in those things and in a space that you can go, that you don't have to necessarily explain. The most beautiful thing about our story is advocacy. We do get to advocate just that. She is alive and breathing and surmounting all these obstacles at such a young age. It's beautiful to go out and she always has a cheering section. It's this little tiny person, a little tiny yellow walker. That's just like she's doing it. People are like just clapped for her. It's almost like she brings that awareness wherever she goes. That's just so sweet to witness.

Daniela SM : 50:29

Yes, I'm mentioning this part for in general, for everything, I always think, yeah, I want to find my tribe, which is kind of what you were saying and that's what is making me think, well, but I wonder if that's wrong, like we actually need to have both.

Nicole Smith : 50:45

Well, and I agree that it is both. It's just like the concept of grief is really needed to sink into. It is necessary, but to live in it is wrong. There's a respite where there's a healing in grief. That is necessary, but to live in it means that you're imprisoned by it.

Nicole Smith : 51:06

The same thing, I think, with the communities we put ourselves in. I think we put ourselves too much in silos, even like a typical person. I think whatever your community is, like people around you and you're right, like podcasts. Really I have a podcast my own. It's a lot of the same types of stories that you're just like this whole other world is opened up before you. That brings you another level of sympathy that you can never accomplish without having known that those worlds exist. But I think there's a balance that needs to be maintained there too. I mean, honestly, the tribes within the CP community that we've gotten into. It's helped me realize what quality of life my daughter will have in the future that I would have never known. Those communities really have opened up a lot of those doors for me in my mindset about the care of my daughter and what her life will look like, but I would never want to just put her into a community with only people with cerebral palsy. It doesn't seem like that would be a healthy space for her.

Daniela SM : 52:04

I see, so you're still working being a mom, a double mom and a wife.

Nicole Smith : 52:08

Yes, a few months back, late last year, I gained a caregiver for my daughter. I can get a little bit more balance back into my life, so I was able to start working again and pouring into my non-profits called Dignity Defense Institute dignitydefenseorg, and we really are an advocacy nonprofit that focuses on education on human value, human dignity and the different ways in which cultures can measure worth, and to sort of try to get cultures to change their mindset around human value in order to just make a culture that's more aware of our values just because we're human, no, and statements on that, or if. Then I've got the podcast. It's called Pro Dignity, do Doubt, and we explore a lot of very similar stories to what you guys have on this podcast, which is so nice to know that there's other just really strong women out there advocating and giving voices to others that are struggling but surmounting obstacles, which is who we are as humans. That's what I do in addition to being mommy, wife, but those are always my first priorities, though.

Daniela SM : 53:15

Yes, well, thank you. I appreciate that you're doing a lot and your expectations are amazing.

Nicole Smith : 53:23

Well, again, I've had to reduce them in some places.

Daniela SM : 53:26

Yes, of course we cannot do. You know, my mother-in-law always used to say you can't have everything. And I'm like maybe I can have everything, but not always at the same time.

Nicole Smith : 53:36

Yes, or a little bit. Well, and having a strong partner is really really important to that. I think that's about the reason why really anybody can find balance is that if you don't have a spouse that's providing that cheerleading and assistive measure like I do it for his career, he does it for mine, and it comes in seasons too and being okay with that. I think young people need to know that that it's not always going to be like full on all the time. Sometimes you're going to be this, sometimes you're going to be that, sometimes you're going to be those things and multiple things and sometimes nothing at all. That's just life, yeah.

Daniela SM : 54:09

You have to work really hard. I mean, especially in relationships. It's actually the hardest job that we have and we don't think how important it is. You know, and communication and all the things that you don't teach you in school that are super important.

Nicole Smith : 54:23

They're super, super important.

Daniela SM : 54:25

Yes, so, nicole, thank you so much. We went over the time because it was too interesting that good talk for hours actually, because I have so many questions that I could ask you. You do. I love your questions, thanks. I will put all this information, the show notes, for people also to follow on your podcast Perfect. And again for sharing and for being so kinder and teaching us all about your world.

Nicole Smith : 54:49

Oh, thank you so much for having me on, I appreciate it, thanks.

Daniela SM : 54:53

I hope you enjoyed today's episode I am Daniela and you were listening to, because everyone has a story. Please take five seconds right now and think of somebody in your life that may enjoy what you just heard, or someone that has a story to be shared or preserved. If you think of that person, shoot them a text with the link of this podcast. This will allow the ordinary magic to go further. Join me next time for another story conversation. Thank you for listening. Hasta pronto.