Ep. 2: The Story of William

Episode Transcript

Alyssa  0:00  
"William is sassy...but yet doesn't say anything....but is still sassy...."

Madeline Cheney  0:11  
Hi, I'm Madeline Cheney and you're listening to Episode Two of The Rare Life: the story of William. In our conversation Alyssa shares all about her four year old son William, who has a strong personality and is very loved by her family. He is also non verbal, wheelchair bound and deafblind due to various birth defects. She shares Williams birth story, which contains possible triggers, so please listen with caution. We also talk about how Alyssa and her marriage have evolved because of their beautiful son. Alyssa is amazing. I am so thrilled to release my conversation with Alyssa as my debut parent episode. I learned so much from our conversations both in this episode and her special topic episode. which releases next week. She is such a rock. Alyssa and I met through a mutual friend (shout out to Hannah Mars for connecting us). Alyssa is a registered nurse, working with patients battling acute leukemia, an occupation inspired by her son, which we will talk more about in the episode. Alyssa is a lover of tacos and napping. Let's dive in. 

Alyssa, thank you for sharing your heart today.

Alyssa  1:29  
Yeah, no problem. 

Madeline Cheney  1:30  
So let's talk about William. How would you describe William? Who is he?

Alyssa  1:36  
William is sassy.... But yet doesn't say anything.... But is still sassy... And he is a character and he has so much personality. Oh, and he's cuddly and cute and lovey, and just I don't know he's like the best kid ever. He's awesome. We love him.

Madeline Cheney  2:02  
I love that. What are his medical struggles?

Alyssa  2:09  
Oh, this is such a big like...So...he was born with a birth defect in his brain. And so it just--with that just comes so many things with that. And so he has seizures, hydrocephalus, dysphasia (can't swallow, he has a feeding tube). He has issues with like hormones because his pituitary gland developed abnormally He has balance issues because this cerebellum which controls your balance and everything, developed abnormally, developmental delays. He has vision impairments.Just a whole slew of things.

Madeline Cheney  3:00  
Like a whole laundry list, right? So like how does that translate over to like real life for you guys? I know he's in a wheelchair. So like things like that, What does life look like for him and for you guys with all of those medical diagnoses?

Alyssa  3:19  
Life is like just it's for us. It's normal. And he's our firstborn. So it was just kind of this is the way it is, but when somebody else looks at our lives, our lives are full of doctors, doctors appointments, surgeries, and lots of like, like even with school, it's just different it, you know, you don't-- like the way he learns is different. You're not sitting there and saying, okay, 123 or ABC or you know, all those things. It's more like, how this feels or how that feels or touch this leaf or touch my hand and you know, the way he learns is different. Our lives are just very like I don't know, it's very, you know, we have the wheelchair and we have the doctor's appointments and we have the IEP s it's very busy and it's very different. Like, I don't know how to explain it.

Madeline Cheney  4:18  
Yeah, totally. And he has a feeding tube. Is that a G tube?

Alyssa  4:23  
Yeah, it's a G tube. He had an NG tube for a long time, and then we got the g-tube.

Madeline Cheney  4:28  
Kimball had an NG and OG, do you know what an O g is? Like no one seems to know what that is because it's so rare. But yeah, um, you mentioned that becoming a nurse was inspired by your son. So that must have happened after he was born that you went into nursing?

Alyssa  4:44  
Yes. I was going to school at BYU Idaho, and I was going to be a marriage and family therapist.

Madeline Cheney  4:50  
Oh, okay.

Alyssa  4:51  
So that was a big change. I was just in the hospital so much and I loved the nurses. And I always told myself, I was not smart enough to be a nurse. And so I never did those classes. I never did anatomy and physiology. I just didn't even touch it because I was like, there's no way I can do this. And when Will was born, I had to learn all of these things. And I couldn't say, I'm too dumb to do this. It was my son, I had to. And not only did I do it, and did I learn it, but I was like, This is cool. I like this. And so I was like, so everybody was like, you should be a nurse, you should be a nurse. And I looked into it, and I got into school, and I love it. I love being a nurse. It's awesome.

Madeline Cheney  5:40  
That is so cool. And I think it's so neat to see these paths that our children take us on. Like you would never ask for them to be to have these struggles, but it's cool to see what positives come out of it.

Alyssa  5:53  
Oh yeah, I would have never even thought about being a nurse or going-- none of that stuff, unless I had William. Like, there's no way I would have never even thought I was-- I didn't touch on that with a 10 foot pole. Like, I ain't going near that science building. No. But I love it. I loved it. And I did well, in nursing school. It was great.

Madeline Cheney  6:13  
That's so cool. What was that, like when you first found out that he his body was not forming typically?

Alyssa  6:22  
So I was at school, BYU Idaho. So everybody was getting pregnant. And I was pregnant with two of my really, really good friends. And I just expected everything to just work out the way it was supposed to. And when we found out about his birth defect, I kinda... I just was very shocked. And I just felt like I was like, I'm not like everybody else. And it was very hard to be in that environment where everybody was having babies. Everybody was getting pregnant. Everybody was having these baby showers. I just I was the-- I was the odd man out, you know? It was it was very hard when I found when we found out that he had a birth defect. It was probably one of the hardest moments of my life. And it was hard because they told us he would die. They said he will not live past 30 weeks (and I was 23 weeks along). So I was like, Oh my gosh, in like a couple weeks, you know, they told me he'd be stillborn. So I was like expecting to deliver a stillborn baby in the middle of Rexburg, Idaho. I was like, oh my gosh. And I had a lot of anxiety. I had a lot of fear. And my pregnancy was so happy and so normal. And everything was the way it was supposed to be. And then in like the five minutes when the doctor found the birth defect and told me (or like 15 minutes or whatever) it was it like I changed to fear and dread and anxiety and it was all the negative feelings. It was really, really hard, it was one of the hardest times of my life.

Madeline Cheney  8:15  
So what happened? I mean, obviously he's-- he lived. Can you tell that story?

Alyssa  8:20  
Yeah, so we were in Rexburg, Idaho and we were in like this tiny little like, doctor's office the doctor saw on the ultrasound that his skull just didn't form. He said that-- he described it as a horseshoe. So if you look at like a horseshoe, and it's just a U shape and so the skull didn't complete, and then they saw brain tissue was deformed and everything and so they told me he would pass away and they offered me an abortion. And we declined the abortion. It was the way we felt and what we wanted to do and they said, you know, what do you want to do? And the way I coped with it, I was like, I want to do everything I possibly can to have this baby live, because in my head, I was like if he dies, I can go through that. And I can say, well, we did this and we did this. You know what I mean? There's nothing that could have been done. I did everything I could. I did everything I could and it happened. And so there it was out of my control. So we saw more specialists. So we were up in Rexburg, and we would travel to Salt Lake at the University of Utah--

Madeline Cheney  9:27  
Oh man.Which is four hours away! A four-hour drive...

Alyssa  9:30  
Yeah, I know! And I work there now so it's crazy. And we traveled to the University of Utah we saw the high risk OBs there and they-- we decided should we have a vaginal birth c section what should we do what how should we go about this? And we decided to have a planned C-section because of his head and--

Madeline Cheney  9:57  
Really quick. Did they tell tell you there was any chance of him surviving or at this point where they just telling you he will not live 100% guaranteed?

Alyssa  10:07  
100% guaranteed he will not live. Well that's what they were telling us. They were like there's no way. We had a casket picked out. We had a burial plot picked out we had a graveside service arranged. Like I remember when we drove down to his birth, we packed up like pictures and just to set up things for the graveside service. And we had like, we had a little outfit to bury him in, we had little booties... 

Madeline Cheney  10:33  
So you were totally expecting this to end in his death.

Alyssa  10:35  
Oh, and our plan was that he would be born (there's a little window in the C-section room at the University of Utah and they pass the babies through the window into NICU) and the plan they had like life support on standby they were they were going to immediately intubate, put them on life support. We were going to spend time with him. And then we were going to take him off life support and be with him until he passed away. That was the plan.

Madeline Cheney  10:35  
Okay. Okay.

Alyssa  10:36  
And we went to the room, to the hospital. And then we, you know, had the C section. We're like the first c section of the day. And the NICU team came in and were like Okay, we got this on standby. This is what's going on.Tthe social worker came in, you know, you know, it was the whole big shabang, my husband's family was there, and my mom was there. And the doctor came in before the C section and said, I want you to know when your baby's born, he's not-- he's probably not going to cry. He's going to be limp. And he's going to be blue, like, she was trying to prepare us. And when he came out, he cried. He cried right away. And they they immediately showed him to me, so he was like, awake enough so that she could show him to me and then they passed him through the window. And then once he was settled, they were going to come and get Ben, my husband. And then there he was going to go back and then you know, we were going to do like a blessing like a you know, a ceremonial blessing for our religion and everything and then...they took him through the window and we waited and waited and waited. We didn't know what was going on and, then they came back and got Ben. And then the nurse said, we're ready for dad and we were like, Okay, here we go. We've been preparing for this. You know, we're all like, ready for this plan that we made. And the nurse said, Mom, he's breathing on his own. And when she said that, I like like, I'm getting choked up right now just thinking-- like, I... it just overcame me. I just started crying and crying and crying. And my husband went there and he did fine. Um, he had his birth defect. But he was breathing on his own. And his heart was fine. His lungs were fine. It was just he just had this birth defect. And so it was-- So that's like how he was born. It was a really emotional-- like it was like, we're having a baby. It was great. And then it was like, oh, our baby's gonna die. And it was like, oh, our baby's living again? Oh, our baby has to be in the NICU. it was just this roller coaster. 

Madeline Cheney  13:11  
Oh, my gosh, yeah. Wow. And so he went to NICU in Primary Children's?

Alyssa  13:12  
Yeah. Primary Children's NICU.

Madeline Cheney  13:19  
Okay. And what were they doing for him there?

Alyssa  13:22  
They were trying to figure out how to fix his head. Like so he was diagnosed with cutis aplasia, it's this--if you look it up, it's like a quarter size-- It's just the bone in the skin doesn't development. His was like the whole back of his head was open, like his brain was exposed. And it was this miraculous birth defect that nobody's ever seen. And so neurosurgery and plastic surgery, were trying to work together and figure out how do we close his head because we can't like let him go home. You know, so that's what they were trying to figure out and then he had other complications along the way. Like that's when they found out about hydrocephalus. And then he started having seizures and so they had to figure out the seizures and, you know, that kind of thing.

Madeline Cheney  14:08  
Okay. What is hydrocephalus? Can you define that?

Alyssa  14:14  
Um, the way I learned it in nursing school was a water on the brain. That's like the-- like literally what I know like in Latin, you know, you translate it, it's your brain. You have cerebral spinal fluid in your brain and spinal cord. And you're-- it's constantly flowing. Hydrocephalus is where it can't flow basically, and it just builds so the fluid in his head would just build and build and build and there's a lot of pressure.

Madeline Cheney  14:43  
Oh, pressure, okay. What does that what does that look like? Like what how does that affect him?

Alyssa  14:51  
So here's what's complicated is normal hydrocephalus is you know, they're really-- they have these certain signs that they have hydrocephalus his was different because he didn't have skull on the head. So it was like the hydrocephalus didn't really have any-- it could expand, if that makes sense, because he didn't have anything containing it. When they did fix his head and put skin, which he still doesn't have bone, he just has skin. Still it was able to expand, it would cause pressure because there was something there now. He gets really lethargic, and then it puts pressure points on the brain so it can cause like vomiting, it can cause seizures, it can cause a lot of different things. But the treatment for that is a shunt so he just basically has had a drain in his head for three years. 

Madeline Cheney  15:53  
Okay. Wow. How does he-- How is his head protected without the skull, you said it's still just skin.

Alyssa  16:03  
Yeah, it's just skin. And he kind of just does his own thing. Like we were super nervous, like, I guess to describe life with Will was that at first it's like, oh my gosh, you can't touch this kid. He can't go anywhere. He's super fragile. Just stay there. And then like as life goes on, he would do little things like he would lift up his head and we're like, Whoa! and then we were just like, okay, he's fine. And then he would roll and then we're like, Oh! and then like, Okay, he's fine. You know what I mean? And so he kept doing things. And then there was like, one time he fell off the bed. And we were like, if he ever falls off the bed, this is an emergency because he doesn't have skull. And he fell off the bed and it was right before one of my finals. Like my husband called me was like, um, he fell off the bed and I went into my final like, Okay, I'll be there after my finals! And, like we rushed him to the emergency room and he was fine. And it was just things like that. And so we always were like, he needs a helmet. He needs this. He needs that. And then we-- he just kind of showed us along the way that he was okay. And we just had to learn because like, and the doctors are like, we were just gonna have to see what he does because we've never-- this is this is the case we don't know.

Madeline Cheney  17:19  
Okay, so with that, so when we talked about earlier, we talked about his, like, rareness level or like his, I don't know, his rank of rareness. So like you said, He's like the only one in the world with his specific cerebral palsy. Is that right?

Alyssa  17:36  
Yeah, I guess tech-- Yeah, technically, it's cerebral palsy. It's like part of the dia-- You can like, put it under the long list. But yeah, like he has neuro like brain abnormalities, so he fits under like cerebral palsy or microcephaly or you know all those like neuro diagnosis, but like his specific like there was there's no other kid that was born with this birth defect who has the exact like, outcomes or you know what I mean? Like the exact birth defects, the exact diagnosis, all of the things that he has with his defect and everything.

Madeline Cheney  18:18  
I wonder if part of that like when you were talking about how they told you like it's a lethal diagnosis, right? Isn't that the term where they didn't expect him to live? I wonder if that's part of it. I wonder if a lot of these children that are born with like a more similar form of what he has don't usually live to-- have you like, have you ever thought of that? That way?

Alyssa  18:43  
Yeah. And we actually had his neurosurgeon tell us, he said, babies with these kind of defects. They're miscarriages. He said, usually they're miscarriages. He's like for some reason your body just didn't miscarry him. And that always stuck with me. Because I had a miscarriage later. And I was always like, maybe I just, this sounds so bad, but I was like, maybe I just make babies this way, like, you know what I mean? Like, maybe that's really messed up in my head but like, like I was like, maybe, you know, but--I think if I go down that road, it just gets too stressful, you know? So I do think that sometimes those kids just-- maybe they don't make it. I--you know.

Madeline Cheney  19:36  
Yeah. I'm a carrier for what Kimball has. And I've had a lot of miscarriages and it is like, really chilling to be like Kimball--Like it's a miracle that I didn't miscarry him. You know, like it...It really is this thing where it's like I almost didn't have Kimball in my life and I'm sure that's how you feel about William. How has William changed your life and changed you as a person?

Alyssa  20:05  
Oh, I--I don't--so many things. So many things. Like, I was just like-- I just-- I don't know how to say it. Well first of all, I am a nurse now and I have a wonderful job that I love. I don't think I could have ever found that. Um, but more than that,  I know that like for myself, I just see things--I see the world differently. You know, you see the world in a different light. You are grateful for things that are you wouldn't be grateful for before, if that makes sense. I know for a big thing for me is like with Will. Like, you know, you probably know this with the IEP s and they're like oh goal is not met, this is not met, he's not meeting these standards like he's developmentally not meeting these things. And for me, I've always just been grateful that he's there. And I don't worry about things like that. Does that make sense? Like I don't worry about is he rolling? Is he this and that's, that's gone into other aspects of my life where, you know, you're just just kind of go with the flow, I guess like just kind of take it as it comes and you deal with it and you have an open mind and you don't I feel like I don't get caught up on things as much. Or worried about things as much and life is just happier. And I'm more grateful. And I'm more open about things and some things-- I could go on.

Madeline Cheney  21:59  
I think it changes your perspective when you when you fight for them to live, and maybe even several times over their lives, and that's just not this guarantee there and then all of a sudden them just being alive is enough. They don't need to do these different things that you may have. I don't know. I'm not--I'm speaking from my experience, I guess I'm not trying to put words in your mouth, but like--

Alyssa  22:22  
No, I like I agree with that. It's like, you just don't get caught up like they're not rolling. Like what's wrong? It's like, I'm just happy that he's vocalizing. I'm just happy that he's here. And I'm happy that he's happy. And I get that all the time with people like what can he do? What can he do? Can he do this? Will he ever be able to do this? And my--and I like... maybe people are let down by my answer, because I'm like, I don't know. You know what I mean? Like, I don't know what he's gonna do and I'm like, but whatever, we're gonna let him run the show. And we'll just let life come and we'll deal with it when it comes and it's helped me to not be so focused on the future, so anxious about the future, and just focusing on the now. And it's good for my anxiety.

Madeline Cheney  23:25  
That's like, amazing to hear you say that. Like, having a child with these special needs helps your anxiety. I love the that. Alyssa, how has this changed how you feel about yourself, like your view of yourself?

Alyssa  23:44  
You know, that's a really good question. And I don't think anybody's ever asked me that.

Madeline Cheney  23:51  
We're getting personal!

Alyssa  23:53  
Yeah, no, let's do it. I like... when you said that, like my mind immediately went to one thing and then went to like the complete opposite. Like, I think of myself as a strong woman,  like me, myself. Like, I'm like, look at who I am, like I'm strong and independent. I can do anything. But then the other side of me I, I kind of go back to that young woman sitting in the doctor's office being told that her son has a birth defect and thinking what's wrong with me? Is there something wrong with my body? Is there something wrong with me? Um, and the more that I see William and the more that I see how he is and who he is and who he's becoming that little, young woman that was told that in the doctor's office kind of starts fading away and she comes up a little bit but she kind of fades away and I get more of a look at what I can do, like look I become, and I really like happy with who I am and I'm comfortable with who I am. And I've noticed that I'm not so worried about what people think about me. But I was before you know, like when we first took William out in public like that was hard, you know, I think I'm more confident in myself. And I'm more like unapologetically myself, I guess.

Madeline Cheney  25:24  
That's awesome. I relate with a lot of that. I think--I don't know. I think it kind of gives you this like mentality of like, I can't do anything, like Bring it on. Which Juston, my husband's always like, Don't say that Madds! but I'm like, really! Like, you know, when you've gone through really hard things, it's like, I've got-- I got through that, like, I'm made of tough stuff!

Alyssa  25:47  
Like you think What's the worst thing that could happen. If I lose my kid? Well I was there. And look at-- you know what I mean? And I was there or I've been there. And we've been preparing, because we don't know how long he has with us. And you know what I mean? And you kind of think like, what's the, like, my mom would say to me all the time, when I get like upset about work or something, and she goes, This is not the hardest thing you've been through. And I'm like, I feel that way. I'm like, this is not like, if I can get through what I went through, like, so scared my son was gonna die. And then he didn't and then you know, this rollercoaster of emotions. If I can get through that, I feel like I can get through anything. AndI just, I just have that confidence. It's bad. I probably shouldn't say that.

Madeline Cheney  26:41  
I know. Knock on wood. I love that.

Alyssa  26:45  
I feel like I can do it. And it'll be okay. Everything will be okay.

Madeline Cheney  26:53  
I love that. One last question. And then we'll wrap it up. How has this affected your marriage relationship?

Alyssa  27:09  
I think it's gotten us so much stronger. And I came from--I was raised by single mom. My dad left when I was in high school. And I was like, I kind of grew up with this... When it gets hard. The guys leave. And when I had William, Ben was there and not only was he there, but he's been so invested in William, and he loves William. And he-- he's just the best special needs dad. I'm sure you feel that way about your husband too, but I'm sorry, Ben is the best special needs dad. 

Madeline Cheney  27:59  
That's amazing. 

Alyssa  28:00  
He makes like-- William can't see. Right? He can't see. And so he kind of can see light and you'll, you know, we make it dark so he can see better. And Ben will make like a fort in the living room to block out the light. And he'll sit with William, and he'll like try to help them see the light. You know, and I just think I'm like, I just-- he's just so amazing. And he said that about me too. And I think we've seen how amazing each other are. And we've just, we've been there, we've been through it. And I mean, I was never alone in the NICU crying, I was never-- I had him to go through it. And we depended on each other a lot. And our marriage is a lot better now than it-- I mean, it wasn't even bad to begin with it just got so much better. I'm so in love with him because he is just an amazing, amazing man, amazing father. And I just see how great he is.

Madeline Cheney  29:06  
It's great to see someone go through something hard and see what they're really made of. And I know sometimes that ends really badly. And that's like asking you that question, I knew that marriage is great and that's why I asked you otherwise I wouldn't have because I found your Instagram, your post about your marriage with him and how its transformed. And I really-- it really does make or break you, something that hard. Andit...I don't know, I agree with you. I've also had a really good experience with my marriage since having Kimball and I think it's something I don't take for granted because I know that a lot of marriages fall apart. When when something this hard happens and...I don't really want to ended on that note...

Alyssa  30:00  
Exactly, no, no. You know what, though I know, marriages that did not end well with having a special needs child. And oh my gosh, that woman is the strongest woman, like a single mom taking care of a special needs child like she is a boss woman. And I'm like, like, I look at my mom. And my mom is the most powerful and strong woman I know. Like, she is ah-mazing. And I love her. And she is just--she's a rock. And, you know, and it goes back to how you think about yourself. When you go through this. You're like, I can go through and I can do this. Because you know, it's all about you. Like even though you're married and you have a marriage and you love your partner. It's still like, you got to love yourself, right? I love me. And I know me and I know my beliefs and my values and I know who I am. And, man, single moms. I mean, there's probably single dads out there. You guys are great too. But all I've only experienced single moms. And oh man, they are the strongest woman, strongest women.

Madeline Cheney  31:16  
Amen to that. We're going to one last question. (I'll edit my edit out myself saying one last question like three times). One last question. Let's end it on: Are there any last thoughts about William, like your, I don't know, those deep emotions about William, how much you love him.

Alyssa  31:37  
I just...he doesn't talk. He does not talk. He does not walk. He doesn't count. He doesn't tell me what he's thinking. But oh my gosh, I love him. I love him. And I love spending time with him and I have so much fun with him. And I--you think like, for a kid that can't speak, and a kid that can't do these things, that all the other kids do. But you have just this have this deep relationship with him where, you know, I have this thing because he can't speak to me. And sometimes I get worried about him because we're moms, let's be real. And he-- and I just looked at him and I'm like, just Are you okay? Like, just tell me you're okay. Just tell me. And I can't describe it. It's not like--he doesn't smile. He doesn't-- It's just this like, look that he gives me and he can't see but he like looks at me. And I just get this overwhelming like feeling or connection from him. And he's just like, Mom, it's okay. I'm fine. And it's, it's just this. It's, it's, it's hard to explain how deep of a connection I feel with William and I didn't breastfeed him. I didn't hold them all the time. And I didn't have the birth plan and I didn't have the, you know, he doesn't talk and we don't do the coloring and we don't do the regular mom things that everybody does. But I still feel connected to him and I still feel bonded with him and he is my lovey, and I love him and he's the bubs and I just, I have this deep connection with him and we communicate together and it's just...I just love him. He's my baby.

Madeline Cheney  33:26  
Alyssa, I LOVE that, that's amazing. You are amazing. And William is amazing. 

Alyssa  33:32  
You're amazing. 

Madeline Cheney  33:33  
Thank you. We're all-- everyone's amazing. Well, thank you so much for opening your heart to us and sharing your experiences William and your experience of being his mom.

Alyssa can be found on Instagram at Alyssa.reidhead. Photos of Alyssa and her amazing family are on the website, therarelifepodcast.com under episode 2. So if you're interested in putting a face to the story head there. Be sure to listen to Alyssa's special topic coming out next week as she shares her take on quality of life. I learned so much from that conversation. Do not miss it. See you then.