Ep. 124: Suzy’s Story | Brain Injury, the Exhaustion of Living in Survival Mode, + Wondering If This Is the End




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Life as parents of medically complex children is full of extremes: intense love for our children, deep exhaustion from handling their medical care, incredible resilience to keep going, and extreme anguish that comes with having to make decisions that none of us can even fathom until we find ourselves in that position.

Today’s episode with Suzy Boubion is so raw and so tender as we discuss some of those impossible choices we face as parents to medically complex children. She tells the story of her son Oliver’s brain injury during birth, how the experience of raising a medically complex child changed her relationships, including her marriage, and how the exhaustion of living in survival mode for years takes a toll on your mind and body.

And toward the end of the episode, we also touch on the topic of child loss and how Suzy is navigating her emotions and decisions that come along with that possibility for her own family. If that’s a sensitive topic for you, please listen with care.

Episode Transcript

Suzy Boubion  00:00

It's a really unique grieving process because it's continuous. You know, which any medically fragile parent understands. It's not like a death; you haven't lost your child. They are living, but they're not living in a way that you had ever envisioned for them, or your family, and you have to make these ongoing painful decisions.


Madeline Cheney  00:24

Hello, you're listening to The Rare Life. I'm your host, Madeline Cheney. Today, I have a story episode with Suzy Boubion, who you might know from Instagram as Oliver's Odyssey, which is her handle there.


For those who are newer listeners, these story episodes are just what they sound like – a parent can share their story in regard to their medically complex child, and how it's affected their life.


And I felt like Suzy and I could have kept going, and going, and going, because there was so much to unpack and discuss in her eight years of being Oliver's mom. This one is very tender, and quite heavy.

So, if you need extra time to process this episode, that totally makes sense, and I encourage you to allow that space.


In this episode, she shares her son's birth, in which he sustained a severe brain injury, which was the cause of his medical complexities and disabilities; the way that her marriage was impacted by the totally different ways of processing this trauma; and the impossible end-of-life conversations and decisions that they've been grappling with and are grappling with right now, and how that's impacted her and her family.


And as a little aside, as hard as child loss is to talk about, I know that for many of us, it is a painful and real part of our realities. And because of that, in our upcoming season, to season eight, we will have a handful of episodes focused on child loss, including the emotional impact, as we explore here in this episode, as well as the logistics and what to expect that way.


So, this episode was really a beautiful and raw way to kind of debut that topic coming up at the end of the summer.


A little more about Suzy and then we'll dive right in: Suzy, her partner Conrad, and their two sons, eight-year-old Oliver, and four-year-old Nico, live in a yurt by a lake in Washington state. Suzy's awesome, I think you will just love her too.


Suzy is, unsurprisingly, a lover of nature and photography. Let's jump in. Hi Suzy, welcome to the show.


Suzy Boubion  03:10

Hi, thank you for having me. I'm so excited to be here with you, chatting. And I just want to say I really admire you, and just the incredible gift that you give to our community. It's a really special thing that you've created here, and I'm so honored to be a part of it.


Madeline Cheney  03:33

Aw, thank you. Well, and right back at you. I don't think it's any secret to the audience that I usually will pick guests out of, like, my Instagram circle, because that's, like, the people I'm reading the posts, and you know, seeing into like their lives, and how you articulate things, and how you process through things.


And I've definitely had you on my radar for a long time, like, ooh, she would be so fun to talk to. So, I'm excited to us finally happening. I really appreciate your honesty – that's really like what I go after, when I see someone just being really honest about the situation, how they're feeling about things like that. I think that's so valuable.


So, I'm really grateful for you being on here to share. I would love to start out with Oliver's... you know the drill. When you first found out that anything was, quote unquote, “different” about him. I never know how to phrase that, but you know, when he had medical complexities or disabilities.


Suzy Boubion  04:26

I'm gonna take a deep breath. I am definitely used to writing and not speaking, so just bear with me through the nerves. I'll get smoother as we go.


But yeah, so Oliver's condition. We knew about it really from the beginning of his life, to a certain extent, because he had a brain injury during his birth. So, he had the oxygen deprivation during some or all of the birthing process.


We don't know. We don't know a lot about his birth. But anyway, he was born blue and not breathing. So, it was very apparent that there was a problem from the get-go.


And I’d had a healthy pregnancy, so it was really, as with everyone that goes through an HIV injury, it's a shock. It's just totally unexpected, came out of left field, and you're completely unprepared for what you just went through.


And for me, I would say it was definitely kind of compounded by my belief system, which was that I believed that birth was a natural, going to be a smooth experience that didn't need hospitalization.


I fully trusted my body to birth a healthy child, I don't think there was even any thought in my mind that the birth wouldn't go great, and that he wouldn't be healthy.


Which I do think that that is something that should change in prenatal care, is that I don't think that any moms are prepared for the chance that something could not go perfectly. And I think it sets us up for just a real, like, an extra level of shock if something goes wrong.


But anyway, I was in a birth center for my birth. And I won't go into all the details of the birth, because it's just a lot. But anyway, he ended up being in the NICU, and he was on a cooling blanket. And, you know, he required resuscitation, and he was intubated.


And for the first three days, I couldn't hold them or anything, he was hooked up to tons of tubes and wires. So, it was really, really apparent, like I said, that something was wrong.


Madeline Cheney  06:53

Wow. So, at that point, like, during those days after his birth, was there this fear that he wouldn't make it through? Or were you guys like, oh, he'll live through this, we just don't know what the implications are.


Suzy Boubion  07:07

There was both, depending on which nurse or doctor you heard from that day. Some were very hopeful, and they were like, “You know, kids recover from brain injuries so differently, you know, he's going to be just fine. Just keep your hopes up.”


And then you would have a nurse that would come in that would just be like, this kid is screwed, like, why is he even here? Like, why did you save him? You know, and it was like that attitude.


And it was a really interesting, very painful, of course, time, because my husband and I had completely different responses to these two attitudes.


I was clinging to anyone who would give me hope, you know, the nurses that would come in and be like, “He's gonna be fine. Just watch and wait and see.” And, like, those types of messages were what I needed at that point.


I also didn't have any perspective on what a baby was supposed to act like or anything, because I was a first-time mom. And my husband had had kids before in a previous marriage, he was well-versed with what a baby was supposed to act like.


He also rode with the ambulance from the birth center, and saw the whole resuscitation, and saw what they had to do to save Oliver's life. And so, he went into it with a very different view of the level of his injury than I did.


Because I was at the birth center, and my midwife was like, he's gonna be fine, he's just gonna get a little help. We're gonna go see him. And so, Conrad, I think, already knew a lot more than I did.


And so, when the hopeful nurses would come in, it would just trigger him so bad. He was like, “Don't tell me that. I know it's not okay. It's clearly not okay. He's not going to be okay.” You know.


And so, he gravitated more towards the doctors who were, you know, a little more truthful, honestly. But, in a way that for a new mother, with all those hormones coursing through you, and all this fresh trauma, it's like, that was way too much for me to handle. I was just like, nope, not going to hear that.


Madeline Cheney  09:21

That is fascinating. And honestly, I know we need to, like, address the dad's situation, because we are so heavy on, like, my mom's perspectives in this podcast. And that never really was the intention, to just have it be for moms.


But that aside, like, I just think it's fascinating because as I learn more about a lot of people's birth experiences, and especially with birth trauma, it just seems like in some ways, like, the dads witness a lot more of the trauma than we do as the birthing person, right?


Like, you give birth, and then they whisk away the baby – like, in some circumstances, right, not all of them – but like, they whisk away the baby, and for our son, like, he was in the NICU. And my husband went with him, and he watched them intubate him.


And like, you know what I mean, like, and then for your husband to be there while they're trying to resuscitate him. And in some ways, we’re more sheltered, I think, from some of that trauma just because, like, we're the ones who just gave birth. Like, that's a major, major thing to have just happened.


And so, you know, there's a lot of stuff, rightfully so, going around our recovery. And like, are you okay, and you know, as the mom, I don't know, getting you back on your feet. Like your midwives like trying to support you in that way, and with all the hormones and stuff.


But I think it is so interesting, and hard, that, in some ways, the dads witnessed that. Like your husband, where he witnessed that trauma, firsthand, like, right there in front and center, and how that impacted each of you in a different way.


Suzy Boubion  10:42

Yeah, absolutely. It's really two separate experiences, those birth experiences, because like you said, the birthing partner has all these hormones, and it's like adrenaline, and I don't even know what else.


I forget what all the chemicals are, but, you know, that affects your psychology, and it affects your experience and your views.


And the other partners are apart from that. They don't have any of that going on in their own bodies. And so, it just really does make for a totally separate experience, which impacts both of the grieving processes, or the trauma processes, or the way that you approach the situation.


And I think that that's where a lot of couples, they start out on two completely different paths. And it's really hard to maintain a relationship amidst such serious, life-altering decisions and experiences, you know? When you have such different realities from the get-go.


Madeline Cheney  11:44

Yeah, like, from literally, like, the first minute of his life, right? That was so different for both of you, like, your trajectories were very different. And, rightfully so, you are processing in different ways. How did that impact your relationship with your husband?


Suzy Boubion  12:01

It, of course, has strained our relationship over the years. We've been... I feel like we've been really lucky because we started out. We were on the same spiritual path, we had the same belief systems, we had a lot of similarities in our views of life, and death, and quality of life.


And so, we were lucky in that respect to be united on most things. But over the years, you know, there have been times when, you know, we've had just completely opposite views on something for Oliver. And it's hard.


I really feel for partners who just are very different in their worldviews from the beginning. And they have to come together somehow and make these impossible decisions together. It's very difficult to keep a relationship together in that kind of environment.


Especially with, like, the sleep deprivation, and just the unreal amount of stress that comes along with the medical life.


Madeline Cheney  13:07

Yeah, I mean, like, there probably are, I don't know, I can't think of any other situation that'd be quite like that, right? Like, in making those types of decisions. And we'll talk more about those decisions you guys have grappled with later.


But like, those types of decisions about someone you both love so much, right, and you both have this ingrained, instinctual desire to protect and to keep them safe. And you know, all the things, right, and so all of those emotions all thrown together.


I mean, it's hard. Even if you agreed on everything, it'd be really hard, right? But then throwing in like, having differing – and it sounds like completely opposite – opinions on certain things, like, that would be, understatement, so hard.


Suzy Boubion  13:49

Yeah. It's an understatement. I can't give more powerful words. It's just, it's hard. Yeah. We've been lucky that we do work pretty well together, and that's another thing. I mean, I've experienced other relationships where I think the story would have been a lot different for my marriage. But yeah.


Madeline Cheney  14:10

Yeah. I mean, I just think that the things that we go through with our children impact everything, alright, it flips everything on its head. And so, I think, you know, obviously, marriage is a big part of that.


It's a big one, that a lot of, I mean, it can't ever be the same after that, you know, for better or for worse. Just different.


Suzy Boubion  14:28

Yeah. It changes your whole view on life in general. It's like, you aren't the same people. And I know people say that, like, after kids, you're not the same person. That's true in any parenting experience.


But with a medically fragile parenting experience, you are so changed, and you have to try to grow together through that, which is just a real added level of shifting around. You come together as two people, and then you just completely both change. I'm saying this totally wrong... sorry.


Madeline Cheney  15:02

No, I know exactly what we're talking about. No, totally. You're both completely changing, like, everything's different about yourself. And you're like, oh, yeah, we got married... before we were completely different people.


Suzy Boubion  15:14



Madeline Cheney  15:15

So, I think in some ways, it can be, like, I know in some instances, and even – I don't think any marriage is like black and white, like, we are now stronger, or we are now weaker, right?


Like, I think every marriage, or every partnership, is going to be a mixed bag of, like, we're stronger in these ways, and this has really been a hard thing for us to struggle with.


But like, I mean, like, how could it not change? Right? Like, how could it not be completely different since you're completely different people?


Suzy Boubion  15:42



Madeline Cheney  15:44

I mean, I do think, like, in some ways, on the positive side of that, and I don't know if this is, like, your experience, but for me, it’s been kind of cool to both change together. And kind of navigate that. Because I do feel like in some ways, I'm like, we can do anything together now.


Like, we've been through that. We can do anything. And I think that feels really cool, even though it's like, obviously really hard stuff that you've been through together. You’d never wish it on each other, or like, want to do it again.


But like, I don't know. I think it does bring a little bit of that, like, “We made it through that, we can get through anything.”


Suzy Boubion  16:16

Yeah, Conrad and I definitely have that perspective of just like, you know, we wouldn't trade the things that we have learned and the wisdom that we've gained from this life path. It's given us a much more compassionate, global, understanding, humble worldview, towards other people's situations and towards life itself.


And in other ways, it's made us, like, more jaded. There have been different parts of the changes, but overall, we wouldn't. We wouldn't trade that.


Madeline Cheney  16:59

Yeah. No yeah, totally. Again, it’s a mixed bag. It's like, yeah, I'm a better person. Also, I'm like, a little screwed up.


Suzy Boubion  17:06

Right. I need therapy.


Madeline Cheney  17:09

Therapy. And even then, it's like, you go through therapy, and you're like, I healed! I'm also still screwed up. But like, I don't know.


Suzy Boubion  17:15

So, so correct.


Madeline Cheney  17:18

Because it's not like we're talking, we're not like, “I went to college, and I'm never gonna be the same.” We’re talking about like, really intense stuff with our children. Like, of course that's going to completely screw us up in some ways. So, it is what it is.


Suzy Boubion  17:32

Yeah, it's that we walked through intense trauma, we continue to walk through intense trauma together, ongoing, and we don't know if there will be an end, or what that will look like. And, yeah, it's a very complex experience.


That unknown, you know, that “just wait and see” or waiting for the other shoe to drop. It's like, that was our experience from the beginning. You know, because there's so many unknowns with a brain injury.

People do heal very differently – you can't tell how a child will recover, you know, by their MRI.


And when they told us, I don't know, it was probably within the first week of our NICU stay that they actually sat us down with the MRI and had like a whole group meeting. And it was one of those very surreal experiences, because they pulled up the MRI images, and they said,


“There's still a lot of swelling, so we don't have definitive answers. But we are seeing partial patterns for cerebral palsy, and mental retardation.”


And when they said that last word, my whole, it's like in the movies where the room just gets super, like, your perception gets super small, and all the background blurs out, your hearing leaves, and there's like a ringing in your ears.


And it's this very surreal, like, it's shock, you know? It's this place of shock that anybody who's received a diagnosis I would think would know what I'm talking about. I don't have the words to describe it, other than surreal. It's like you're living someone else's life, or you're living in a movie.


So, I didn't hear much of what was being said in that meeting for a while. And then at some point, I like, faded back in and I remember the doctor saying, “Will he walk? Will he talk? Will he throw a baseball? I can't tell you that. You just have to wait and see.”


And for some reason, the image of him throwing a baseball was like, it's just... it crushed my heart. You know, it was like, what do you mean he won't be able to do all this, or maybe he will?


But like, just being thrust into this absolute unknown was just an unreal experience. And that's really the first time we became aware of this concept, which is “wait and see.”


Which, in the HIU world, it's something that almost all of us hear, because you don't know how a brain injury is going to heal. And so, you just have to wait and see.


And you have to navigate these decisions that you make about your child's care. The therapies that you will do, the medical interventions you will do, all in this climate of, I have no idea what the outcome is going to be.


Some people will tell you, “You have to do as much therapy as you can, it's going to make or break their life!” You know, and then other people will be like, “This is mostly up to fate, essentially. No matter what you do, you're not going to have a big impact.”


And so, you have these, like, dueling perspectives throughout all of their care. And you find that throughout the medical system. And you know, some doctors, they just look at your kid and they're like, “No, no.” You know, “Why would we bother?” Kind of.


And then you have other doctors who will do anything to support you.


It's a really unique grieving process because it's continuous. You know, which any medically fragile parent understands. It's not like a death; you haven't lost your child. They are living, but they're not living in a way that you had ever envisioned for them, or your family, and you have to make these ongoing painful decisions.


It's a pretty crazy life path, I have to say. It's rich.


Madeline Cheney  21:54

Yeah. And I'm just thinking that, like, if the doctor sat you down and said, “Your child will not walk, he will not talk, he will not throw a baseball.” I mean, how do you think that would have impacted your grieving process, or like, your processing of at all?


Do you would have made it harder, or easier, or just... different?


Suzy Boubion  22:14

From my perspective, it would have made it easier. Living in the unknown has been something that has been very difficult for me to learn how.


It's a skill, you know, and I've had to learn it, like, within this process of intensely grieving, and making huge decisions, and getting, like, a PhD level education in the advocacy and medical systems.


And it's a difficult skill to gain, and I can't say that I'm great at it. Even at this point. But I'm used to it now, you know, and I think not having a definitive answer has been a really difficult part of the journey for me.


It would have been helpful if someone could have been like, “Yeah, all this you're doing, it's not gonna make a difference. So, beating your head against a wall trying to make it happen. He's not going to do this.” And then you can go through the stages of grieving.


Madeline Cheney  23:10

Yeah, like, there's some amount of closure to that, I think. To be like, I'm really sad about this, but I can have some level of acceptance of the reality of it, and then move forward.


But if you're like, but what if I did this one thing? Or, what if I were a little better at therapy? Or, what if... you know, because it's putting a lot of it on you, is what's happening.


It’s like, if you just do XYZ, maybe it will help him. But also, as you're doing XYZ, I imagine that you also have this voice in your head of like, is this even doing anything? Like, I'm like working so hard, is it even making a difference?


Suzy Boubion  23:45

Yeah, you are describing the themes of my life for the last eight years. Especially if you're someone who really tries to give something your all, which most parents in this situation do. They're just like, gonna throw every resource they have at it.


And then you're always wondering, am I doing enough? You know, and if you know you're not doing enough, in your perspective, there's this added layer of guilt. And like, ah, it could be better, it could be better.


You know, “I'm going to be the reason that he doesn't do this. I'm going to be the reason that he doesn't recover in this.”


And I think during the early years, when you're still focused on, like, acquiring gross motor skills and stuff like that, and acquiring milestones, that can be a really kind of toxic mindset. It's just a really hard place to live in, this constant, like, obligation, and guilt, and feeling like you can never do enough.


Madeline Cheney  24:42



Suzy Boubion  24:43

And I think that that changes, you know, as the years go by, and you realize, like, eventually you realize, “Oh, okay. Yeah, he's probably never going to walk.” You know, or “He's actually not going to talk.”


And like, then seven years down the road or whatever, you realize kind of the situation that you're in. And I think from there, you can start to let go of some of those obligations. But for a long time, it's a question.


Madeline Cheney  25:11

Yeah. And like, if you think about the early years with a typically developing child, or non-disabled child, they just kind of do these things.


You are responsible for a lot, right, especially when they're first born, and you're feeding them, and you're helping them sleep and changing their diapers and bathing them. Like, they require a lot of care.

But they also just kind of naturally progress through the milestones.


Which I know we can talk about that too, but like, when you have another child after you've had a disabled child, it's like, mind boggling. Like, how are you, like, you're getting up on all fours by yourself?


We didn't do any therapy for that, like, you are doing it on your own. That's kind of how it is, the experience for a lot of parents, right? If they have a non-disabled child.


But then for all of those milestones to be kind of placed on your shoulders as the caregiver and as the parent. like, that's so much. That is a huge weight to have, and then again, added in where you're not even sure he's going to walk or talk. There's just so much.


Suzy Boubion  26:10

It is. I feel like I'm glad that Oliver was my first, and that I had absolutely no idea the level of struggle and effort. And just, I don't want to say “normal,” because I'm not...


Madeline Cheney  26:32

I know. It's a, it's a loaded word.


Suzy Boubion  26:35

It is a loaded word. The “typical path of development.” I'm in a way thankful that I was completely kind of ignorant to that with Oliver because I think that I was already in so much pain. And I think that a lot of times, I went to denial in order to deal with the pain that I was in.


And I think that that would have been harder to use, denial, if I had really known what was going on. And like, it didn't become clear to me until I had my second child. And the birth was just this beautiful, perfect, flawless, traumaless experience.


And I was holding this baby in my arm, and he was breathing without machines. And he lashed and breastfed right away. And it was, it was this beautiful experience that... it was so healing and life changing.


And then, like, as soon as I felt all of that bliss, it was compounded by this really painful, heavy grief that was the realization of everything that I had lost with Oliver's birth. And all of that bliss, and bonding, and getting to bathe him for the first time, and seeing all of his cute little movements and noises.


And it's like, I don't have any tender memories for a long time after it. It was difficult, and full of trauma, and really complex emotions that nobody tells you how to navigate that. Like, you're just stumbling through it.


And I think the whole... you know, with Oliver's birth, it's like, we got out of the NICU, and we came home, and everyone around us was like, “Okay, so he's good. He's good now.” And it was like, “No, he's not good.” You know? He's really not good.


Like, there are some really big health issues that we are going to have to continue to navigate, but like, trying to explain that to people, and navigate your own grief, and learn how to do all the medical stuff, and become a full-time caregiver... it's just, it's so different than the typical birthing and parenting experience.


And I didn't realize that until I had Nico. And then as Nico grew and developed, it just blew my mind what he could do. He would just do it! It was like he was a totally self-sufficient little human, and I was like, do I have even to parent you?


Madeline Cheney  29:20

Like, do you need me?


Suzy Boubion  29:22

Yeah, you don’t even need me, like, you’re good! You could go out of the woods and fend for yourself. Like, it was... it was such an opposing experience.


Madeline Cheney  29:31

Yeah, I think that makes so much sense that that would almost be like this delayed aspect of your grief. Where you say you were able to kind of be in a level of denial because you hadn't experienced having any child before. And so, he was all you knew.


And then to have Nico, right, is the kind of like, “Oh. This is what I was missing out. This is what he was missing out on.” Right? Because as you were talking about, there were no, like, none of these tender experiences with birth, or after that for a while.


Obviously, a big part of that, too, is like, what Oliver was going through. And I think that's one thing that makes me... I definitely feel, like, anger about it. My therapist says it's very normal. I’m raising the anger.


But this anger about, like, that's so unfair. You know? Like, you see, like, this is how. Kimball deserved that, you know, Oliver deserved that. Like, this really tender, needleless birth, where they're just being cuddled and coddled and breastfed. Like, every baby deserves that.


And so, I think that the contrast is what we're grieving. If every baby were born in a traumatic way, I mean, that would suck. Maybe no one would be on the earth anymore, I don't know that people would have babies.


But like, you know what I mean? Like, then it wouldn't be as upsetting. But just knowing like, what, for lack of a better word, what it “should” have been like, right? And so, I think that is so painful.


Suzy Boubion  30:55

It is, yeah. I think that's why I get pretty triggered when people say, “Disability isn't sad.” And first, let me say, like, I agree. Disability by itself is not sad.


But seeing your child suffering in these medical ways, you know, with just getting poked and poked by needles, and intubated, and trauma, and being robbed of tender, beautiful experiences? That is sad. Like, there is sadness and pain in that.


And I think that's also a reality that a lot of caregivers experience, is like, no, I'm not sad that my child is different. You know, that's not where the sadness lies. The sadness lies in all of the suffering and hardship.


Madeline Cheney  31:51

Well, and I would also... I don't know. Push back a little bit against that. Because that's kind of like, I don't know, I feel like I've been really, really pondering on this for a while recently.


And like, I just feel like, they're also... I think it feels uncomfortable to say, right? Like, it feels cringy, and it feels, I don't know. We never want to ever imply that we don't accept our children and love them fully as they are, but I do think that there is sadness too in the other aspects of disability, right?


Like, when you were explaining what it felt like for them to tell you that he may never walk, or talk, or throw a baseball, like, obviously, your love is not contingent on him doing anything. Like, those are not things he needs to do to earn your love by any extent.


But at the same time, like, I think there is a real grief in the loss of even just those things. As far as we know, it doesn't cause him pain or suffering to not do those things, because he doesn't necessarily know any different.


But like, as a parent, when you're expecting a child to be non-disabled, again, like you said at the beginning, because, like, we don't necessarily think there's any chance that we’ll have a child with disabilities, which is an issue right there.


But like, I think that there is that grief that we feel over those aspects of disability are also very valid. And often those shift too, I think that's a big part of it. It’s that as we move on and move forward, we're kind of like, oh, actually, I can see how this is just another way of being. And you know, I have more acceptance of that.


But I do think that, like, I agree with you, I have a hard time when parents do or people say disability isn't sad, because there are lots of things that are really hard about it.


Suzy Boubion  33:26

I agree 100% I was trying to choose my words very carefully on that subject.


Madeline Cheney  33:33

I feel you, I feel you.


Suzy Boubion  33:35

Yeah. There's another layer of that. I mean, it does get easier over the years as you accept the conditions for what they are, and you learn to work within the limitations. Or the differences, or whatever word you want to use.


But, you know, it's resurfacing again, now that Nico is older. And he says, “Oh, what if Oliver could run and play with me, then I would have someone to play with.” And that's coming from him, you know, he's not biased in any way.


It's a genuine feeling. Like, I wish my brother could do this with me. And right now, you know, in all of his life, he's really not well. And it's past disability – it's just, he's complex. And Nico sees his brother and wishes that it could be different. And like, absolutely, I have those feelings.


Madeline Cheney  34:33

And I love like picturing Nico expressing that, because I think that's like a really fascinating perspective to hear about – like, yeah, this innocent child who is not ableist, who doesn't have all, you know, the ingrained societal whatever.


Like, he just wishes his brother could run with him. Like, he's sad he can't do those things. And like, I guess what I'm saying is you can clearly see when it comes from a child, like, how innocent that is.


Like, there's nothing evil or hostile about that feeling. And so, that translates over to us as parents too. Like, it's okay to be sad about that.


Suzy Boubion  35:06

Yeah, absolutely.


Madeline Cheney  35:09

Okay. I would love to also talk about, like, the difficult decisions you kind of alluded to that have cropped up later in life with Oliver. Which I know is a really difficult topic. But do you mind sharing a little bit about what those decisions have entailed, and how that's affected you?


Suzy Boubion  35:27

Yeah. I'm gonna do my best to talk through this, it's a really raw subject that's really present in our everyday right now. So yeah, forgive the emotions that will probably come up.


But, so, a couple years ago, Oliver had a really bad seizure. And we ended up in the ER, and really aggressive interventions were made, it was decided that he could still be having subclinical seizures even after all the benzos.


And that they needed to do a different drug, called fosphenytoin, and they couldn't do that here. So, they decided he would need to be life flighted, which meant he needed to be intubated and flown down to Seattle, and the whole thing. And that's what happened.


But it went... the intubation, they didn't give him enough fentanyl. So, when they put the tube down his throat, he started like writhing off the table. And I was watching this whole thing, and screaming, and begging them for more fentanyl to put him out.


And they were like, “Oh, he can't feel it,” you know, it was just back and forth. They ended up finally knocking him out, we went on a helicopter, he was in the ICU.


And when he woke up a couple days later, he was still intubated, because before they can remove the breathing tube, they need him to breathe on his own. And so, they have to bring him out of the sedation.


And Oliver is nonverbal, and we really don't know how much he understands. And so, I'm telling you that because there is a barrier to the understood communication between us. You know, I don't know how much of what I say he truly understands and can process. And I don't know what he's thinking.


But I do know the terror in his eyes when he woke up, and that tube was down his throat. And he couldn't get it out. He just kept getting super agitated and trying to cry. And it was the definition of suffering, like, there was nothing I could do to help my child.

I had to let him come out of the sedation in order to get the breathing tube out, but he couldn't come out of sedation because he was freaking out that there was a tube down his throat. And I couldn't communicate effectively about that.


And he was also, like, three or four. So, there's that aspect. And it was that hospitalization that changed our whole view about medical intervention, specifically with epilepsy, and really influenced our choices going forward.


We have not been back to a hospital since that for seizures, because he has had so much medical trauma over the years that you can see in his reactions now. I mean, it's, if he even sees a needle.


I got a blood draw the other day, and he freaked out and cried the whole time. The needle was going into my arm, it wasn't even his arm, but his trauma from all of those interventions has been compounding over the years.


And so, as a quality-of-life choice, you know, that we're making for our son, it's like, we are not going to put him through absolutely any life saving measure in the world to keep him on this planet with us. And we would make the same choices about ourselves too, you know, that's just our view of things.


And we see it as doing everything we can to protect him. And I'm having trouble choosing the words, because I know this is, it’s such a, it's a topic that nobody would ever want to talk about, and would ever want to say these things, you know, about your decisions for your child.


But it's our reality. And so, that worked okay for a while. But then, this last fall, he started having seizures where he would stop breathing. And he was no longer responding to his daily anti epileptics. And in those moments, he wouldn't respond to the rescue meds.


And so, we would have to give more and more doses of the benzos to knock out the seizure, and he would have these long periods where he would stop breathing. And... I do not have words to explain that level of trauma and panic. And it was torture.


I mean, it was like out of body experience, just like, I can't. What are we supposed to do in this moment? Like, every time this would happen, it was just this, like, what are we supposed to do?


Madeline Cheney  40:53



Suzy Boubion  40:54

One night, we were on the phone with the palliative team. It was really late, it was like the middle of the night, and he was seizing. And I was just sobbing, and we were going back and forth, like, what are we supposed to do?


And you know, they were just like, “It's absolutely your choice what to do. And we will support you in anything that you choose.” And at that point, they said, you know, I think that you should transition.


Or “We'd like to offer you, that you might want to transition him to hospice care, because the level of support that you guys need right now? It's a lot more than we can give. It's a lot more than you're getting from any of your team. And you need to work these decisions out with support.”


Madeline Cheney  41:43

And not while it's happening. Like, you were like, what do I what do we do? So, you have that, a plan that you made, removed from that situation to kind of guide your choices, is that right?


Suzy Boubion  41:56

That's exactly right. That's exactly what they said. It's hard to kind of put these things into the words because it's really fresh, but yeah.


Madeline Cheney  42:04



Suzy Boubion  42:05

Because we would have these experiences, and he would start breathing again. He would eventually start breathing again, and so the crisis would pass. And then we would just, like, shove it away. Like, just shove it away, and try to keep doing this life that is hard enough.


It's like, we didn't ever want to revisit that, and then it would come again, and we'd be thrust into this, like moment of indecision.


And all of the voices through our whole journey, you know, I've been Oliver's main advocate. And so, I've heard all the therapists, and I've heard all the doctors, and everyone has these differing perspectives.


And it's like, what do I do? What is doing right by my child? What does that look like in this chapter? Does that look like preserving his life at all costs, and putting him through, “It doesn't matter what I have to put him through. How many intubations and how many blood draws and sticks?


And it doesn't matter that they can't get a line. And so, a doctor runs in and shoves his head to the side puts a needle up his jugular, like, it doesn't matter. Any of that. I'm going to do it all.”


And I know that a lot of parents would. And that is one of those decisions that... it's not fair. It's not okay to have to think about the stuff. It's not okay. It's impossible. But here we are.


Madeline Cheney  43:35

Yeah. So unfair. And unthinkable, right? Like, for parents. For like, just, society. Like, where if you don't have like a close family member or something going through something like this, I mean, you can't even... you don't even perceive that there are people making these types of decisions, right?


Should I do all I can to preserve my child's life at great suffering on their side too, and on your side, and other family members? Or do I make the unthinkable choice to let them go?


Like, I think these are just the most unthinkable questions that, as parents, like, a lot of us in this community have to face. And that is just so... there are no words, right? There are no words.


Suzy Boubion  44:20

There aren’t. I mean, we’ve spent hours sitting with the chaplain, the hospice chaplain, just trying to talk through this. And he just kept saying that there aren't words. “There's nothing I could guide you in.” It's an impossible thing to think about. There just aren't words, you know?


And I think that, you know, in this... it's not just the epilepsy. You know, it's, his body is fighting so hard. In a lot of his days, he's just kind of in this very checked out zombie stage.


And we're having to come up against the reality that as he's gotten older, and his conditions have worsened, and you know, gotten more complex, it is really difficult to keep him well with any quality of life.


And I think that as I was thinking through this, you know, our journey, it's... I think the peeling the onion is such a good representation of the medically complex and grief journeys. It's like, you peel a layer, and you get to this place of stability, and you think, “Oh, everything is great. And I'm strong again, I've made it through this grieving process, I'm on the other side.”


You know, everything is going well. I can start to post motivational things, and talk about silver linings, and help lead other people through the grief!


And then, you know, you'll fall into the next deeper layer. And then you realize, oh. Oh, okay. I'm not through it. It's a continuous process of being humbled to your knees, and having to find the strength, and gather all of the skills and wisdom that you've learned from peeling the previous layers to get through this next one.


Madeline Cheney  46:40

Man, it's just so tiring.


Suzy Boubion  46:42

It is.


Madeline Cheney  46:43

Well, another understatement. So exhausting, to go through that cycle again and again. And I'm sure that, like, when you're between the layers, or, you know, whatever with the metaphor, you're like, okay, like, maybe we're okay.


I mean, I would guess you’re probably like, but is it? Like, when's the next shoe gonna drop, you know? And so, do you feel like as you were going with this metaphor, peeling away the layers, that there was a realization of where the layers were leading?


Like, as you’re kind of like, oh, like, maybe it's just gonna keep getting worse until it ends up with his life ending, I guess. Has that been, like, a realization for you guys?


Suzy Boubion  47:22

Yeah. Yeah, that's the current layer that we're in. And we're really tired. And we don't have enough support. And it's hard to watch him not be well and know that you would do anything to change it. Fix it.


But there's literally, like, you can’t fix it. You just have to wake up every morning and convince yourself that you should just keep going because you have to. Like, you just have to keep going. But like, your soul is tired. Your soul.


It's hard to stay out of the darkness, those spirals of like, where is this leading? What is right by him? What should I keep trying to do? What should we let go of? Where is quality of life in this season? What does it look like now?


And it's so easy to say like, just stay in the moment. You know, or any of those, like, cliche things that are true, they are true. I’m not taking away from the fact that they're true, but they don't help. Like, it doesn't, it doesn't change the fact that like you're watching your child suffer and not live a good life.


Madeline Cheney  48:56

That's your present. That is your present.


Suzy Boubion  49:00

That's the present. That's the moment. And the moment is super painful. And each moment is super painful. And, yeah, I mean, there are so many metaphors, you know, but the roller coaster or the ocean, or just, they're all accurate.


It's being in a deep dark ocean alone, treading water, and getting hit with wave after wave after wave. And then the set will clear, and you have a second to catch your breath, and then another set cones and just pounds you and pounds you and pounds you.


And that's where we are right now. It's a really difficult place to be, especially after eight years, because like I said, we had a couple really good, relatively calm, trauma free years. And we all let our guard down a little bit and thought, okay, we've arrived. We're through it.


Madeline Cheney  49:59

And then to go back there. And for it to even escalate from there. I mean, like, so traumatizing to literally go back to what you were traumatized from before, right? You're reliving your past trauma. Like, that's everyone's worst nightmare.


I don't know, I feel like that's what our brains are like, “Oh, but what if that happens again?” We say, “It's okay. It won't happen again.” But then to actually go back there?


Suzy Boubion  50:24

Yeah, and the inevitable question is, how many times is gonna keep happening? How many times can I come back from this? How many times can I get up and keep fighting?


You know, and I think that, after so many years of intense sleep deprivation, and just knowing that, if you could just get enough support, like your family could be well, but you can't. So, you have no option, you just have to get through it.


And like, that type of grinding it out year after year, it erodes at your health. It erodes your mental health, it breaks down your spirit, it erodes your physical health, for sure.


And so, I think that when another layer arises, or another wave hits you, it's like, it's harder to get back up as the years go on. That's been my experience, and it's super painful right now.


Madeline Cheney  51:21

Do you feel... I'll preface this with, like, an experience from my life. It's not the same thing, I'm not trying to relate it. But just, like, I'm just curious if you felt a similar thing.


When my dad passed away from brain cancer really suddenly, like it was... he was totally fine until he was, like, bedridden and just dying. And we're thinking, like, would he just die already. Because we knew that he was going to, and it was really, it was horrible.


I had an 11-year-old sister and a 14-year-old brother, like, it was completely tragic. And I felt so conflicted, because I was like, I want him to stay. But if I know he's gonna pass away, have it happen already.


Like, this is so painful to watch, it slowly happening. Do you ever feel similar emotions? Or is that... I don't know. I'm just wondering if you've ever felt a similar thing.


Suzy Boubion  52:11

This is something that I have always wanted to write about, but I never did because, because I think it's so easy for people to lash out at you. And they don't understand the situation that you're in. And I never wrote about it.


But yeah, I have felt that way throughout Oliver's life. And it gets worse in the very difficult times where he and we are suffering a lot. It is an emotion and a thought that I know is valid, and also, like, attached with it is a ton of guilt.


And, like, shame, for feeling that way as a mother. Like, it's monstrous. It feels evil, or something. It feels gross. But like, so many of the things that we experience in this medically complex life are that it's gross. It's not reasonable.


Madeline Cheney  53:09

And we should not be in these situations, right? Like, so of course, we're having things like that. Like, it's unthinkable.


Suzy Boubion  53:18

It is. And, yeah, I mean, I oscillate between that, that thought process and thinking, “You're just being overly dramatic, like, he's going to recover. We're going to figure out his health issues. We're going to figure everything out. And this is just a dark chapter.”


Madeline Cheney  53:37

It’s the nurses. It's the nurses from the New Year.


Suzy Boubion  53:40

It is, you’re right.


Madeline Cheney  53:41

Like, you have the two, the doctors and the nurses battling. All these years later, like, they're both in your head. I don't know if it necessarily came from them, right, but it's kind of the same idea of like, this hope and desire to like, “But it'll be okay,” this optimism, and “What's even the point?”

You know, kind of going between those two, I mean, it might totally make sense.


Suzy Boubion  54:05

Yep. It is that. And I think on top of that is just your own... it's really hard to be hopeful when you're sleep deprived and depressed. You know, it's like, it's really hard to get to that motivated place where you're like, “I'm gonna go advocate, I'm gonna figure this all out!”


And like, I'm not saying I don't do it. I do it every single day, but it is a struggle. It's somewhere I have to work to get to now, which it was not true in the early years.


In the early years, I just downed a bunch of coffee and went to battle all day. And I just, like, grinded it out. You know, and I can't do that anymore. My own physical health isn't. I can't.


Madeline Cheney  54:48

Well, when you're depressed, for whatever reason, you're trying to drag yourself through sludge. Like, everything is hard. Even if you don't have like these horrible traumatic things happening in your life.


Like, making dinner is hard. Getting out of bed is hard. Like, these small things that are normally really easy, they take tons of effort. And so, like, that makes sense that that would just wear you down and wear you down from having to push through for so long.


Suzy Boubion  55:14

Yeah. I had this thought, like, swirling in my head, when I envisioned doing this podcast with you. It's like, I so wanted to be able to, like, say something wonderful, and like, give other families hope, or whatever. For the future, or anything.


And I just feel like all I can come to the table with is like this raw, very messy season. So, I was just thinking about that.


Madeline Cheney  55:44

I mean, like, that was the intention. Not to sound like a downer myself, but like, over the years, I've realized that, like, that's what we need.


Like, I think hearing someone say, “Everything's gonna be great, it's gonna be fine,” like, it might feel kind of good. But I think like, there's also this need for us to be honest with ourselves, and to be like, yeah, but maybe that's her. That's not me. Or like, yeah, but our situation is really hard.


And so, I think that can also be really toxic, right? Toxic positivity. And I really, I think that hearing from someone who's going through something similar as you, or just has similar emotions as you, I think that actually is really helpful.


Because you don't feel as alone, and you can process through it. So, I mean, like, I really, really appreciate your vulnerability. I know this conversation was not easy to have. And I am grateful that you were willing to, even though like we both knew it would not be sunshine and rainbows.


Things are really hard. But like, I don't know, that's kind of the whole point, I guess. I'm really grateful for your willingness to come on and to share. Is there any last thing you would like to say, I guess directly to listeners?


Like, if they're going through something similar, or they might at some point, anything you would like to share with them, just to wrap up.


Suzy Boubion  57:06

I feel like, from this place that I'm in right now, I don't feel like I have wisdom to share. I feel just humbled to the core, you know, and I think that...


I guess all I could do you from this place is validate that if you're going through something similar, if you have these thoughts, you know, if you're facing these impossible decisions, know that they're that. They're impossible.


You're being asked to do something that is beyond, fields beyond human capacity. And whatever emotions that you have around that, they're valid, and they're, they're allowed. And I think that what I've tried to do in this chapter is to embrace the mess to some extent.


To just, just tell the people in my life, like, hey, my kids aren't gonna make it to school on time. They're gonna have dirty clothes, and everything's gonna be a mess, and I'm gonna forget their lunch, and, like, I'm gonna miss my commitments, and all I can do is my best.


And that's, that's not very good right now. And I think that, you know, just kind of owning where you are in each chapter, it's like, that's all you can do. Every motivational or inspirational thought or quote in the world is not really gonna, it's not going to change the amount of hardship in this moment. And you just got to get through it.


Madeline Cheney  58:50

Yeah. I think that permission to be mad and to recognize how, I love how you phrase that, it's an impossible situation that you're in. And it's okay if you act like it. Like, it's okay if your life shows it, right, that you're in this impossible situation.


Like, that's okay, that's normal. And expecting anything else, I think, is just going to add more pain and suffering to an already really, really painful situation. So, I really like that idea of just being like, this is what it is, and this is it.


Well, thank you so much Suzy. I really do appreciate it. I know this was, like, really... It’s probably a place you don't love talking about or going there. But I really, really appreciate your willingness to, and your vulnerability. So, thank you so much.


Suzy Boubion  59:38

Yeah, I appreciate the space to do it. I’ve been shut down for quite a while, so maybe this is the start of opening back up.


Madeline Cheney  59:51

You can find beautiful photos of Suzy and her family on the website, therarelifepodcast.com. You can also give her and me a follow on Instagram, there are links to do so in the show notes.


There's also a link to an episode that we made a couple of years ago with a palliative care social worker, all about these impossible end of life questions and decisions that Suzy and I discussed today.


It's honestly such a powerful episode, and if you loved this one, I know that you will love that one too. So go on over there if you want more of this.


Join us next week for kind of a total change of gears, as we share dozens of tips and tricks on how to travel with your medically complex child just in time for summer. It was a fun one. Don't miss it. See you then.

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Living with Sleep Deprivation w/ Jill Arneson (Rebroadcast) https://d3ctxlq1ktw2nl.cloudfront.net/staging/2023-5-1/332732190-22050-1-40fed6f439bf6.m4a


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68: Dipping My Toes into Educational Advocacy