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Steve’s wife lost all her memory

If you’re a parent, you know that the birth of your first child is an incredible experience. For Steve and Camre, it didn’t happen at all the way they expected it to.

Steve got the call at work that Camre was at the hospital and had already delivered the baby. He dropped everything and drove there frantically, and he was confused because the baby wasn’t due for another 7 weeks.

He ran into the hospital, and the first thing he saw was his newborn son, Gavin. He quickly scrubbed up and held him for the first time. There was an immediate bond between them.

Steve and Gavin
Steve holds Gavin for the very first time, unaware of what was going on with Camre

What Steve didn’t know was that, at that moment, Camre was being put into a medically induced coma in order to save her life. He also didn’t know that when she would come out of that coma, she would have no memory of anything. She would not recognize Steve, and she wouldn’t even know she had just had their baby.

Camre, Steve and Gavin
Camre, Steve, and Gavin

That was the beginning of a long journey for this family, and Steve wrote a book about it. It’s called But I Know I Love You, and you can get it on Amazon (affiliate link).

But I Know I Love You
But I Know I Love You

And if you enjoy this podcast and would like to support it, you can do that at WhatWasThatLike.com/support.

I really enjoyed my conversation with Steve, and I hope you do too.

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Episode transcript (download transcript PDF):

If you’re a parent, you know that the birth of your first child is an incredible experience. For Steve and Camre, it didn’t happen at all the way they expected it to.

Steve got the call at work that Camre was at the hospital and had already delivered the baby. He dropped everything and drove there frantically, and he was confused because the baby wasn’t due for another 7 weeks.

He ran into the hospital, and the first thing he saw was his newborn son, Gavin. He quickly scrubbed up and held him for the first time. There’s a picture of that first meeting of father and son in the show notes for this episode, at WhatWasThatLike.com/39. There was an immediate bond between them.

What Steve didn’t know was that, at that moment, Camre was being put into a medically induced coma in order to save her life. He also didn’t know that when she would come out of that coma, she would have no memory of anything. She would not recognize Steve, and she wouldn’t even know she had just had their baby.

That was the beginning of a long journey for this family, and Steve wrote a book about it. It’s called But I Know I Love You, and you can get it on Amazon.

And if you enjoy this podcast and would like to support it, you can do that at WhatWasThatLike.com/support.

I really enjoyed my conversation with Steve, and I hope you do too.

 

Scott

Have you always wanted to be a dad?

 

Steve

I’ve always wanted to be a dad ever since I was a little kid. I’ve dreamt of swinging on the swing in my backyard. I had an amazing father.

 

Scott

And now you’re living it.

 

Steve

I am living it. Yeah.

 

Scott

Well, we’re gonna get into the whole story here. However, I gotta tell you that, prior to this conversation, I got your book that tells this whole story. It’s an awesome book. I highly recommend it. We’re gonna give people the information about where they can get that here in just a few minutes. At the beginning of the book, you talk about the time you first met Camre. That is so amazing. I want you to tell the story here. I’m going to let people read the book to find out – we don’t want to ruin it. It’s just incredible. The way you two came together and it was instant chemistry. You started dating. Then, what’s amazing is when you planned this proposal to ask her to be your wife. The incredible part is that you made all that effort to make it memorable, and she doesn’t even remember any of it, right?

 

Steve

That’s correct. Yeah. I really put some thought into it. We lived out at a private little lake. We had a small two-bedroom cabin built in 1920. It was at this cool little cabin lake home that we lived in. We would always go on the water so I decorated our boat – or pontoon boat – as The Love Boat. It was on the Fourth of July, so we had a free fireworks show. I said to her, “Oh wow! Look at that firework.” When she turned around, I dropped down on 1 knee on our boat, proposed, and it was a memorable moment. It was something that anybody who gets engaged just wouldn’t forget. Luckily, I have a few pictures of the Love Boat and the sign. I just wrote it on a piece of paper and put some tape – nothing too fancy – but it was the thought that counted and it was a special night, for sure.

 

Scott

Definitely. Well, let’s talk about how she became pregnant. There were some problems during the pregnancy. Can you just talk about what happened?

 

Steve

Well shortly after she became pregnant, we were on cloud 9. We were excited. She was excited to be a mom. I was excited to be a dad. Our families were excited. At one time, I was 30 or 31 years old when I think that my mom thought, “I don’t know. Time’s running out, Steven. You not–”. She already had four other grandkids at that time, all boys. So when Camre became pregnant, it was really good going through the first trimester. The second trimester was really good too. We were just kind of cruising along and as a first-time father, you really don’t think about it. You just think, “Oh. You get pregnant like everybody else and they have the baby. Then you become a parent and you go on with your life”. For us, the third trimester hit her like a ton of bricks. She started to develop nausea. She was constantly throwing up and just couldn’t hold food down. So, we would constantly bring her into the hospital back and forth. Then, they eventually put a Zofran pump on her just to keep the food in her and so that she doesn’t throw up constantly”. Shortly after that, we had the baby shower, but she couldn’t even make it that day. So, she was just on bed rest.

 

Scott

It must be devastating that she couldn’t go to her own baby shower.

 

Steve

Yeah. I only opened a few gifts and I left the rest for her. I took them back and we opened them up together. That way, she still has that feeling of the babies. That way, I didn’t have to do everything. So, shortly after those couple of weeks, she developed some swelling in her throat and that’s when our real problems started to happen.

 

Scott  

You really didn’t know what the problem was at that point. Right?

 

Steve

Not at all. We were constantly going back and forth to the hospital or the OBGYN, and they’d say the same thing, “We’ll rehydrate you and send you home”. She had some swelling in her feet because she stood around for work. So, they had her on bed rest. I didn’t know what to expect. I think my expectations at that time were, “Everything’s gonna be alright. She’s gonna be fine”. I wasn’t too worried.

 

Scott

Neither of you had gone through a pregnancy before. I mean, that’s common when you’re pregnant. Yeah, you throw up sometimes. So, there was no reason to think that anything really unusual is happening.

 

Steve

Yeah and she’s such a strong person. She plays it off so well. I’m fine but she’s throwing up. She would tell me that she was fine as she was throwing up. That’s just the type of person she is. She’s incredible. She’s very strong-willed. So I was like, “Okay, she’s fine”. She kept telling me that she was fine and I believed her. So, it was shortly after that she had some swelling develop in her throat. We got her to the emergency room. They ran tests. Her blood pressure seemed fine. They didn’t know what it was. They thought it could be an allergic reaction to the Zofran pump. They didn’t have the answers yet. So, they kept her in the hospital overnight for observation. That afternoon, she ended up having a grand mal seizure – she’s never had seizures before. She had a grand mal seizure with our child inside of her and she had undiagnosed Preeclampsia. She actually went eclamptic. Her blood pressure skyrocketed to the roof when she had the grand mal seizure.

 

Scott

You were at work when this happened.

 

Steve

Yeah, I was.

 

Scott

She was in the hospital but you had to go to work.

 

Steve  

So, at that time, she was on bed rest. We had a house together but she was just staying with her parents. Her mom was a stay-at-home mom and was at home. So, her mom can kind of keep an eye on her all the time. I had to go take care of her dogs that night. Camre being herself was like, “Go home. Take care of the dogs. Go to work tomorrow”. I’m like, “Okay”. So, I went to work and I was only going to work half a day. I was gonna come back to the hospital and that’s when I got the phone call from– well, Camre texted me an hour before this happened. She told me that she loves me, she’s fine, the baby’s fine, everything’s fine, and she’s doing great. Then, an hour later, I get a phone call from my mom on my work cell phone frantically. She was basically crying and screaming that Camre had the baby. I just dropped. I was just in shock. I just hopped in my truck and drove at 90 miles an hour to the hospital. I ran from the parking lot to the delivery room. As I ran into the delivery room, I put my hands on my knees because I was out of breath. They were wheeling in Gavin as I ran right into him.

 

Scott  

So, when you first ran into the hospital, that’s when you saw him for the first time?

 

Steve  

Yeah. 2 nurses were wheeling him into the NICU unit. So, I just kind of dropped to my knees. At that time, I looked at him. They said, “You Steve?. I said, “Yep”. They said, “Then, this is your son, Gavin but we got to take him into the room. Go wash your hands. Wait for us to call you. We’ll put a wristband on you and you can meet your son”. So, that’s kind of how we met.

 

Scott  

I just can’t imagine the overwhelming confusion and emotions. Meeting your son for the first time and not knowing Camre’s situation was just overwhelming.

 

Steve

It was very overwhelming. I was asking the doctors and nurses, “Okay, how’s Camre?”. They told me Gavin’s fine and they’re like, “We don’t know yet. She’s in the ICU. She’s in a medically induced coma. She had a seizure. They saved the baby. She’s alive”. Then, that’s basically the information I got. So, I put my focus on Gavin just for a few minutes – I got the chance to meet Gavin and he grabbed my finger very tightly. My first thought when I looked at him was, “He looks just like his mother”. I called him Camre Jr. and it brought the biggest smile to my face. He was healthy. He was 4 pounds, 1 ounce. So, he was premature, having arrived 7 weeks early. He was 16 and a half inches long but he was the most beautiful thing I’d ever seen in my life. I was instantly in love. So, I brought in all the family 1 by 1 to meet him. We weren’t able to go upstairs yet because they were doing their tests and everything with Camre. Finally, we got to go into that room and it was just that– If anybody’s been in a hospital like this before, you realize it’s the happiest moment of your life but also the saddest moment in your life on the same day. It’s because you realize – when you get a visual – that you’re looking at the woman you love and she’s in a medically induced coma. She just gave birth to your son. Then, I had this instant guilt that I wasn’t there, which for a long time I kind of blamed myself. However, I realized over a period of time, that there was nothing I would be able to do anyways but, at the same time, I kind of wished I was there.

 

Scott

Of course. As a father and a husband, of course, you’d want to be there. But as you said, over time, you’ve realized that even if you were there, there was nothing you could do. It was 7 weeks before she was due anyway. It’s not like you could spend all your time in the hospital.

 

Steve

Yeah. I wasn’t expecting it. I was at the hospital most of the night before. I left at, like, 1 in the morning. So, I was there for a long time. I went to take care of the dog – that’s why I left. That’s kind of where I found myself going in between seeing our son and seeing Camre in this coma.

 

Scott

Then, that began a period of a lot of mystery as to what her condition was, what caused it, and what the long-term prognosis would be. It seems like your most overwhelming feeling was frustration from just not getting answers.

 

Steve  

Yeah. We were not getting any answers because they didn’t know – that was the frustrating part. You put all this trust in the doctors and they just had no idea what happened. I mean, they know that she had a seizure. They put her in a coma. They saved her life and Gavin’s life but they didn’t know the extent of her injuries. In fact, they didn’t even know she had a brain injury. So that night, I spent the night in the hospital. I slept next to Camre’s bed, as well as the next night. On the next day, they pulled the tube out of her throat and they let the morphine and the drugs wear off. Then, we noticed something wasn’t right. She was hallucinating. She was talking to her hand. She just wasn’t coherent. She didn’t know that she just had a child. She didn’t know who I was. She didn’t know who she was. She didn’t know her parents. She didn’t know anything. She thought she was in church. She didn’t know she was in the hospital. So, we’re obviously, like, “Okay. We want some answers” and they’re like, “Whoa. We don’t know. Let’s get the psychiatrist”. They got the psychiatrist and he, kind of, made a quick diagnosis that he thought she had postpartum depression psychosis. We didn’t even know what that was at that time. Then, we were just kind of going with it. We were like, “Okay. There’s an answer that we believe was the problem.”

 

Scott

Yeah, because what else can you do other than say, “Well okay. He’s the expert”, right?

 

Steve  

Yeah, apparently. We found out he was not an expert. So, from the time that Camre gave birth to the time she was in this hospital was about 5 or 6 days. During that time, we just really weren’t getting any answers. In fact, she was kind of coherent and we tried to let her meet Gavin for the first time but she was just not right. There was something that wasn’t right and everything was going wrong. So, we ended up having her LifeFlighted to a different hospital. It was a trauma hospital because we just thought, “You know what? Something’s not right here”. Then, we found out she suffered a severe brain injury and she lost all of her memory.

 

Scott  

Was the other hospital more equipped with neurologists and people who could tell what was going on better?

 

Steve

Yeah. The hospital we were at wasn’t that bad. They were just more of a residency hospital – it’s like a teaching hospital. So, at that hospital, Camre was more like a guinea pig. They were trying to figure out what was going on. At the other hospital, they just laid down the law. They said, “Move out of the way. We’re gonna figure this out” and they were just so confident. Within days, they figured out that she suffered a traumatic brain injury. It was a severe brain injury from loss of oxygen because her throat was swelled up at that time. So, when she had that grand mal seizure, she lost oxygen to her brain with that action and suffered a stroke. That’s what happened.

 

Scott

All of this led back to the preeclampsia, which was not diagnosed.

 

Steve

It was not diagnosed. No, it was undiagnosed.

 

Scott

Had anyone told you why did they miss that? Did you know?

 

Steve

No, we didn’t know. We never really pursued that issue. We had a lot going on. We were asking questions. We had the medical records and stuff. We were trying to figure stuff out but we never really figured out exactly what happened. We do know that most of our information came from the other hospital. So, that’s how we kind of learned everything.

 

Scott  

You sent me a picture of you holding Gavin.

 

Steve

Yeah.

 

Scottthat 

So, that was when you held him for the first time. When you look at that picture now, what do you think of?

 

Steve

I think of a first-time dad not knowing what journey he’s about to embark on. Unbeknownst to me, at that time, I had no idea Camre even had a brain injury in that photo. I was just happy to be a dad. I was happy my son was alive. I was happy that Camre was alive, fighting for her life in the ICU because she’s still alive. So, I see a dad who was just happy and beyond blessed and, at the same time, not knowing what the future holds for him and the journey that he’s about to go on. It has been an incredible journey.

 

Scott

I get the impression from you that you are a natural optimist. Is that how you would describe yourself too?

 

Steve

Yeah. I look forward. I don’t try to look behind me too much. I’m a firm believer in God and Jesus Christ and I have a lot of faith that has been built inside of me. I try to think positive thoughts and not negative ones. Negative thoughts will just bring you down a rabbit hole that you do not want to go down. I think the word that best describes me is hope. I always have hope that things are gonna get better. Today might not be a good day but you know what? They could possibly be better tomorrow and I’m willing to hope that they will be. So, I think hope’s a good word.

 

Scott

I think so too. When you’re in a situation like that, that’s the best way to look at it. Otherwise, you could just crawl into a corner, get in a fetal position, and just give up. Probably some people would.

 

Steve

I think giving up’s the easy route, though, right? I mean, life’s not easy. So, I’ve always been a competitive person, not with people but within myself. So if I give up, I get disappointed in myself and I don’t like being disappointed in myself. I mean, we all have disappointments but I really try to just think positive and really put my faith in God, knowing that He has a plan not only for me but for my family.

 

Scott

Can you talk about when you first started? When Camre was out of the coma, how you would go into her room and try to communicate with her? What was that like in the early stages?

 

Steve

Well, it was difficult because she didn’t know who I was. So, after she was out of the coma, I was trying to tell her, “Hey. You just gave birth to the most beautiful little boy” and she looked at his picture. She smiled at it but she didn’t know who he was. I introduced myself and she didn’t know who I was. When we learned that she suffered that brain injury – that she had no memory and it happened just beyond her memory loop – life took a crazy turn. I was just heartbroken that the woman who made me a better person, whom I love deeply and just had a child together with, now doesn’t know who our own child is or myself. So, it was tough talking to her because she didn’t know who I was. I was just, “Hi. I’m Steve” and nothing would register at all. So, it was a tough time.

 

Scott

What’s amazing is that even though she didn’t have a memory of anything, or didn’t really know why she was there, she wasn’t afraid of all these apparent strangers who were talking to her and everything.

 

Steve

She was so positive. She had a smile on her face. She didn’t freak out. She just went with it. She just kept going with it. You could tell her something and she’d be like, “Okay” but then she would forget what you told her right there. So, it really didn’t matter. She was just this happy little person. When I think back to the time she finally got released from the hospital, I would constantly remind her of who I am and that we had a child. Now at this time, too, I was working. She had moved back in with her parents. She didn’t know we had a house. She didn’t know we had a child. So, we were at the beginning stages after she got home. She got home first before Gavin. Gavin was still in the hospital. She got home within 30 days, and Gavin within 35 days. So in those 5 days, I would pick her up from her parents’ house after I was done working. I would bring her. She didn’t know who I was. She wouldn’t want to get in the car with me. So, I would try to convince her like, “Hey. I’m okay.” She didn’t really know her parents but she trusted her mom, it seemed. Her mom was like, “This is Steve”. In fact, we weren’t even married yet. We were engaged to be married at that time. So, she wasn’t even my wife. She was my fiancee and she would just hop in the car. Eventually, we’d drive up there and she’d say, “Where are we? Where are we going? Who are you?”. We got to the hospital. She’d ask again, “Okay. Where are we at? Who are you? Where are we going?”. It was just this constant, “Who? What’s going on?”. She just had these questions of what was going on constantly because she literally had only, at that time, 30 seconds of memory, long and short. So, it was just constant. She had so many questions but they were the same questions over and over again, “Where are we? Who are you? Who is this child?”.

 

Scott

She didn’t even know she was asking the same question over and over?

 

Steve

No, because she would forget. It’s really kind of hard. Even when I talk about it, it’s hard to wrap my mind around that. When you hear stories of people losing their memory, they don’t think about it in this capacity when you lose all your memory. It’s not that only when you lose it but that you keep losing it within seconds. Then, over a long period of time, it was a minute. You can’t time it exactly. There’s no rule of thumb for her memory loss. It’s just the way it is and you just have to accept it.

 

Scott

This is just what I find so fascinating about this whole story – the mental aspect of it. So you guys would get to the hospital and she would still ask you again, “Where are we? Why are we here?” but she would know about the car. She knew she was traveling.

 

Steve

I don’t think she knew she was traveling. I just think she would forget instantly. She was just kind of out of it and it’s really hard to describe. It really is because you really kind of have to see it and live it. She questioned where she was, where she was going, and who people were but she never questioned like, “Okay. I’m hopping in this car.” She was never really overly questioning. She was just more curious, “Okay. Who are you?”. She trusted people. She had this innocence about her. She was just this beautiful, innocent woman who had no idea who she, myself, her family, or her whole life was. It was gone – everything. She lost everything. Still to this day, she doesn’t remember her childhood or our son’s life. All these memories are still gone.

 

Scott

At some point, it seemed like she saw progress because she was starting to remember her own name. Was that the first sign that she might get better?

 

Steve

Yeah. Now, of course, I’ve told you before I was always hopeful that she was going to improve. She was only 24 when this happened. So, she had time on her hands. So, over a period of time, she remembered her own name, “Okay. I’m Camre” and shot questions. “Okay. My name is Camre”. “Yes, you’re Camre”. “Okay” and she got that repetition about who she is. So, she started there and it kind of worked. It just kind of kept going. Then, there were these little defining moments when you look back at her knowing her name. Then, like the title of our book, when she told me that she didn’t know who I am, ‘but she knows she loves me’. When she accepted the fact that she would just go with me – when I would pick her up – eventually, she would come over and trust me. We were starting to be a family. The first year, she lived at her parents’ house for well over a year. She would just kind of come over and hang out for a few hours. Then, her parents would pick her up or I would drop her off. So, I was responsible for Gavin. I had to raise Gavin. It was just me and Gavin at night. Then, I would drop him off at either daycare or her parent’s house and, kind of, do that cycle for a long time.

 

Scott

So that was, kind of, your routine at that time?

 

Steve

We had a routine. I worked 5, 6 days a week and Gavin would be with me at night. I would take Camre or just take him, depending on if she came over. In the beginning stages, she wouldn’t come with me because she didn’t know who I was. She eventually started to trust me because I showed up every day. I think part of our story, too, is just showing up every day, not going away, not giving up, and just showing up. I always showed up. I was always at her parents’ house, ready to pick her up. Even if she didn’t want to go with me, I was ready to pick her up. I was ready to get Gavin and go start our family life at our house. It wasn’t an ideal situation. It’s not what I wanted, obviously, but I was happy and thankful enough that I still had my family intact – that’s what meant the most to me. I was willing – and still am willing – to do anything to keep my family together.

 

Scott

I think about this from the perspective of her parents and seeing their daughter have to go through this. They have to be just so incredibly relieved to have someone like you saying, “It doesn’t matter what happens. I’m here for her for the rest of her life. That’s what I’m committed to and I’m going to take care of her”.

 

Steve

Yeah. I re-proposed to her. I talked to her dad. So, “I love your daughter. I love Camre. She’s the one. When I first met her I knew right off the bat.” So, I think we’ve developed a fantastic relationship.

 

Scott

Was this about the time when she came home? So, you guys were all living at the same house?

 

Steve

It took about a year for her to move back in.

 

Scott

Okay.

 

Steve

It actually took longer for her to move back and she just brought a go-bag. So, she would start spending the night but it took 8-9 months. So, those first 9 – 10 months, she just brought a go-bag. She would come over for a few hours. Then, it would just kind of be me and Gavin at night. So, I got up every night. I did all the burping, the feeding, the bathing, everything. I was like mom and dad.

 

Scott

When the seizures started, was that after she had come back and was spending the night at your house? Was that before she came back for good?

 

Steve

That was a year after her brain injury. She had her first seizure while she was at her parents’ house during the day. Obviously, the ambulance came. We went to the hospital. Then, she just started having seizure after seizure. So, this is where her parents were fantastic. She was at her parents’ house while I was working, so they gave me the opportunity to still make a living and take care of Gavin. They were taking her to her doctor’s appointments during those days. So, a lot of times, her mom had Gavin too. She would be at the doctor’s with Camre and a little baby, so she had her hands full as well. So, it hasn’t just been all me. It takes a village, they say. That’s when she started developing epilepsy and was put on different seizure medications. The dosage of these medications are insane. She couldn’t walk right. She was walking sideways. It would knock her out.

 

Scott

So, those were side effects?

 

Steve

Those were side effects. The side effects were memory loss, nausea, dizziness, and she was only, like, 110 pounds. She was taking 2000 milligrams of seizure meds because her seizures were really bad. In the first year, she had no seizures and then, boom. It just hit her like a ton of bricks and she was having seizures every other day. It was not just little – they were grand mal seizures. So, then, our lives took a turn trying to figure epilepsy out. It’s not only about when she was with me but when she was taking care of Gavin. She’d be seizing on the floor, in the car, or when we were out grocery shopping or something. So, seizures were a part of our lives and they still are to this day.

 

Scott

She can, kind of, tell when one is coming on?

 

Steve

Yeah. She knows. She has this aura, she calls it, and she’ll take her little Ativan medicine. She takes that to hopefully subside the seizures. It usually just cuts the seizure timing down. In the beginning, she would have 12-minute long grand mal seizures. Yeah. She knows when they’re coming. She’ll say like, “Hey”. So, anytime I hear the word, “Hey” I freak out because it happens quite often.

 

Scott

How far in advance does she know? When she says “Hey”, how much time do you have?.

 

Steve

Seconds. She’ll stand for a while. I can tell you she’s strong. She’ll stand and I was here. So, she does not want to fall but eventually, if I wasn’t there, she would just tip over. She’s always looking for somebody. If she’s in the other room and I hear “Hey”, she’ll just be standing up and kind of coming towards me. She’d try to find me. So, I would usually just carry her and get her to a safe location. Over time, our son has dealt with quite a lot of seizures. He has seen a lot, so he deals with them really well. He’ll get her a blanket or a pillow, prop her feet up, and just say, “It’s okay, mommy” and he’s really good with it. So, it’s been his whole life, really.

 

Scott  

Partway through or after a while you became concerned from the legal aspect that you were not a husband. You were a fiance, still. Can you talk about your thought process there and what happened?

 

Steve  

Well, I asked her dad, again, to re-propose. So, I did another proposal on another July 4. It was just in front of all our family and I was so dedicated. I’m still into her and our family. I wanted her to be my wife, not just my fiancee. I’ve been waiting for so long. We’ve been through so much. It took 3.5 years after we were supposed to get married – that was when I knew that she knew who I was, when she knew my name and who Gavin was, our life together, and where we lived. She was improving. She showed tremendous signs of improvement. She was getting better and she was on the road to recovery. Even though she might not remember the day before, she was becoming more aware of her surroundings, and what happened to her. That took a long time for her to remember that she couldn’t remember.

 

Scott

Yeah, I was wondering about the same thing. Does she ever ask, “Why can’t I remember things?” Does she know now?

 

Steve

Now, she knows. She didn’t. She would ask questions like, “So, I have a brain injury”. You would tell her that she has a brain injury, and then she would not remember that she has a brain injury. Then if you explained to her, “You lost all your memory” and she’s like, “I lost all my memory?”. She had a hard time. Then, it just faded away, like, shortly after you tell her so she couldn’t remember that because she had short and long-term memory loss. So, she couldn’t do it. Over time, as her brain healed, she’s becoming more aware of her surroundings and what happened to her. She remembers now. She knows exactly what happened. I’m not gonna say it’s easy for her because it’s not. When she started to realize what she lost, she realized she lost her whole life. She lost her son’s childhood. She doesn’t remember her son’s childhood or her own. So, that was a tough pill for her to swallow, but I give her huge credit. She doesn’t give up. She has her bad days but she’s always moving forward. I tried to be that positive light in her life and she has her son. She does it for our child. Even though she might not remember doing things with Gavin, she knows that Gavin has a memory, so she does it for him. So, she’s just incredible.

 

Scott

Do you do a lot of videos so that she can look at this and say, “Yep, that’s what we did that day”?

 

Steve

We take a lot of photos. We have some videos here and there. We just do a lot of photos. The hard part about photos is she can’t place herself in that photo. For me and you, we can go back like, “Oh. Look. We’re on the beach this day, whatever”. For her, she goes, “How did I get to the beach? Where were we? What were we doing? What’s behind?”. There’s nothing behind that photo but we have our wedding video, which was an amazing day. She, again, doesn’t remember but we have the video and she watches it constantly.

 

Scott

You guys took a vacation to Clearwater Beach, which is, like, 20 minutes for me, actually. I know you’re up in Michigan, up where it’s cold. You guys went to Clearwater Beach. She doesn’t remember any of it?

 

Steve

No. That was before the brain injury.

 

Scott

Right. Yeah. That was way before.

 

Steve

Yeah.

 

Scott

Do you try to recreate those things for her now so that she does have a memory of it? Now, obviously, it’s not the same thing as going through it. She doesn’t remember actually doing it but does she know that you went to Clearwater Beach that one time?

 

Steve

I would tell her. She’d believe me because I don’t lie to her. I stay very honest and keep it real with her, so I’m not going to sit there and try to recreate her memories – that was where the book came into play. She doesn’t have our 10-year relationship in memory. So, that’s why I wrote it out. We were just trying to live in the moment and make these “moment memories” when we’re going on vacation. We go to Great Wolf Lodge with our child. We have a cabin up north. We were just in Florida. She has family in Sanford, Florida. We were just in Florida past June for her grandpa and a lot of her family who live out in Sanford. We were just out there and she might not remember it, but we’re living in the moment. We’re not taking life for granted anymore. We appreciate every day, every opportunity, and every blessing that has gone our way. We appreciate everything. So, I think that’s the difference. I’m not going to recreate anything. I tried to recreate our engagement but I didn’t recreate it on the boat. I just did something different. It’s just doing new things and trying new things. Hopefully, one day, these memories will stick – hopefully, they can. We’re working towards beating epilepsy. As I said, the side effects of seizure meds are memory loss. So, if we can get rid of some of these, maybe we’ll get some more memories in there. So, again, I’m hopeful for great things in the future. I’m hopeful she’ll drive one day. I’m hopeful we can leave her alone with her child. It took five years just to be left alone with our own child. So, we’re just grateful for anything that comes our way – positive or negative. We just keep moving.

 

Scott

The brain is a pretty amazing thing and we don’t even know how amazing it is – who knows how it can retrain and recreate itself to heal, and come back from this. Obviously, she made lots of progress since the very beginning.

 

Steve

Oh yeah.

 

Scott

How long does her memory go back now?

 

Steve

A couple of days.

 

Scott

Yeah. Before, it was seconds or almost a minute.

 

Steve

It was seconds. She can think back to something we did, like, a week ago. She can’t tell we did it a week ago. She doesn’t know when we did it. When she really think about it, she would be, “I think we did that last Wednesday.” She knows she did it. She knows the specifics. It’s like a shadow. She knows maybe she did something but then, over time, that memory or shadow just disappears. If we had a picture of it, she’d be able to look back, even though she might not remember actually doing it. She knows that she’s living life and she’s doing things. I think her goal is just to get better and try to get healthier. She wants to get better. She’s strong. She’s a fighter. She’s getting better. She wants to take some stress off me because I have the weight of everything on my shoulders. She knows that but it’s not her fault and she wants to be a mom.

 

Scott

Does she struggle with guilt because of you having to do all that work?

 

Steve

Yeah. She wishes she could do more. From my standpoint, I tried to include her in everything. We have a joint calendar. So, if something’s going on, I would put her on it so she knows. We do a lot of things together. So, yes. She wishes she could do more. She wishes she could just drive Gavin to school. She wants to go to school and be that mom. She sees these other moms with their kids alone, driving. That hurts her because she wants that so bad but she can’t. She just can’t have it right now.

 

Scott

Not yet.

 

Steve

So, yeah, not yet but she’ll have it in the future. I know she will.

 

Scott

If you knew what you were about to go through over the next several years, do you think you could handle it?

 

Steve

First of all, I’ll tell you, “You’re crazy!” It’s been an unbelievable journey. I don’t know. I think I’ve handled it pretty well.

 

Scott

I think you have to just go for what that’s worth.

 

Steve

Yeah. Thank you. For me, it’s always been about family – just keeping our family together. We had this dream when we became pregnant. We were so happy when we found out Gavin was going to be a boy. We picked out his name together. We did all these things together and I didn’t want to lose her. I didn’t want my son to grow up without his mom. I didn’t want to live a life without the girl I love. Even though she might have not known who I was, I knew who she was, and I knew how strong she was. So, I wasn’t going to give up on that and I never will.

 

Scott

I think it’s great that you’ve written a book to describe this whole journey. What was her reaction to reading that book?

 

Steve

Well, she has read it 3 times. She doesn’t remember the book yet but if she keeps reading it – I think that was my mindset behind it – it becomes rote memory. If she keeps doing it, she’ll remember our 10-year life together. Then, maybe, in another 10 years, we’ll write another book, but she enjoyed it at the same time. I will be honest. It does remind her of what she lost at the same time. So, it’s this “Wow. Look at what we’ve been through”. She loves the fact that I wrote her a book but, at the same time, she realizes, “I don’t remember this stuff”. That’s hard for her. So, it’s kind of a catch-22 but she handles it very well.

 

Scott

You know what amazes me? A lot of the parts of the story are, kind of, a medical and a neurological story. Above all, it’s a love story.

 

Steve

It is yeah.

 

Scott 

All right. So this book is called, “But I know I love you” because of this particular thing that happened, which you can talk about if you want to. How do people find the book and work in the order?

 

Steve

Well, the title of the book comes from a time early on when she came home from the hospital. She was at her parents’ house and I was trying to get her to come home. She did not want to come back home with me. I was sitting on her couch and she just looked at me and says, “I don’t know who you are but I know I love you”. That was the defining moment for me, personally, because she didn’t know who I was, but she said she loves me. I’m taking it. That was another huge amount of hope that I’ve always kept inside of me knowing that she loves me and that we’re going to build a new relationship and a new love. So, that’s where the title actually came from, “But I know I love you”. The book is available on Amazon. I self-published it on our 4th wedding anniversary. It just describes our 10-year journey that we’ve been on from the first time I met her, to our first date, to the baby shower, and the birth of Gavin. Then, there were some other defining moments in our lives. The feedback has been incredible. I did not expect our book to get this much publicity. I didn’t know what to expect. I think I was naive to the fact. I just was hopeful that people would just read it and enjoy it. I think that’s what I wanted and I think that’s what’s happening. I think people are actually enjoying the book. So, it’s been incredible. It’s just another blessing from God and in our family. They just keep coming.

 

Scott

Yeah, and I think people enjoy the book because it’s such an amazing story. We can talk about it here for 45 minutes or an hour, but of course, you go into a lot more detail about what actually happened, and what you are going through in everything. Yeah. So, people can find this on Amazon. Do you have a website too? What is that?

 

Steve

butiknowiloveyou.com or you can follow us on Facebook at @butiknowiloveyou. I uploaded some family photos and some articles that share our story, but I think in the future, it’s going to be more. If you want to follow our family, you can. I’ll put some photos here and there. I don’t overdo it because I don’t put everything on there. I’m not that guy, but I just put a few family photos here and there, just so you can get a little insight into our life.

 

Scott

So how old is Gavin now?

 

Steve  

Gavin’s 7 years old now, which is incredible to think about. I can’t believe he’s 7.

 

Scott

7, man.

 

Steve  

Yeah, time flies

 

Scott

I can tell you from personal experience, blink your eyes and he’s going to be off to college.

 

Steve

Yeah. Even when he was first born, everybody says, “Enjoy it while last because, before you know it, he’s going to be 18. He’s going to be moving out”. So, I think that’s the mindset for most parents, I think. You just want to raise your child, build them up right, put your faith in them, and give them the confidence to succeed in this world. We do live in a crazy world. Anything can happen and life’s not guaranteed. We’re extremely proud of him. He is such a good kid. He’s good in school. He has one of the warmest hearts for a 7-year-old you’ll, probably, ever meet. So, he’s an incredible child and we’re just extremely grateful that he’s ours.

 

Scott

I’m gonna have links to all of what we’ve talked about here and we’ll have some pictures on the website in the show notes for this episode.

 

Steve

Okay.

 

Scott

So, people can check that out. If they want to contact you, they can do that through the website as well. I mean, people say, “Just live in the moment. Just live for today” and you guys are doing it on a pretty literal basis.

 

Steve

Every day, more for her, obviously, than me because I can reflect back. However, for her, it does make me not take life for granted and really appreciate each moment – even if it’s as little as putting up our Christmas tree every year. I don’t take anything for granted. I cherish every moment and everything that’s been in our lives. I’m just extremely blessed, grateful, and thankful that things are going well.

 

Scott

Hey, thanks again for listening, hope you enjoyed Steve’s amazing story about his family.

I wanted to let you know about a couple of things, in case you aren’t already aware.

 

First, this podcast has a private Facebook group where all of us can get together and talk about these crazy stories. In fact, several of the guests that I’ve had on the podcast are also in that group so you can talk to them and maybe ask some of the questions that YOU’RE wondering about, that I forgot to ask them on the show. You can join the group and join the discussion at WhatWasThatLike.com/facebook.

 

And if you’re on Instagram, you should also check out my page there. I post something almost every day, and it’s usually something interesting, or unusual, or crazy – stuff you don’t usually see on other Instagram pages. You know my motto – never be boring! My Instagram page is all one word – WhatWasThatLike.

 

And this is the last episode for 2019! It’s been a really great year of growth for this show, and that’s because a lot of listeners have told their friends about the show. If you know someone who listens to podcasts, be sure to let them know about the show. In fact, just send them to the website and have them take a look at the past episode titles – I guarantee you they’ll say, “What? I’ve gotta listen to this!”

 

And I’ll see you in two weeks.