Ep. 65: The Story of Cali

Falesha Johnson  0:00  
Then I went to see a specialist, and the energy change was mind blowing.  

Madeline Cheney  0:08  
Hi, you're listening to The Rare Life. I'm your host Madeline Cheney, and today we have the story of Cali with mom Falesha Johnson. Cali is an 18-month-old baby with a rare genetic disorder called pfeiffer syndrome. In this episode, Falesha shares her story of finding out about her daughter's physical abnormalities via ultrasound a few weeks before delivering her and the power she has found in becoming an expert on Cali's diagnosis. Falesha is awesome. When I found her on Instagram, which you can do too with the link in the show notes, I could tell that we would hit it off, and I was happily correct in that assumption. She is so easy to talk to and I had a lot of fun recording with her. Falesha, her husband Rome, and Cali, live in Seattle, Washington. Woo-hoo to Washington! For those of you who don't know, I grew up there. She attended University of Washington as a track athlete and is now a fundraiser for the school as well as a trainer for young athletes. She is also an avid video blogger sharing their life with Cali. I'll put links for that and her social media in the show notes. Falesha is a lover of books and working out. Alright, let's jump in. Hey Falesha, welcome to the show. 

Falesha Johnson  1:47  
Hi, thanks for having me.

Madeline Cheney  1:50  
I'm super excited to chat about you and Cali and your relationship, and just life in general. To start out, I would love for you to give us a snapshot of Cali about where she is medically and as a person.  

Falesha Johnson  2:07  
Oh, she has come so far. Cali has pfeiffer syndrome, and the easiest way to explain it is that the sutures in her skull fused early. When a baby is born, they have soft spots, and Cali didn't have too many because her skull fused. With that, there are complications in the bone structure. She's got protruding eye, she has a very narrow nasal and throat so she needs a trach. Since her throat is so small, she can't eat like we do so she has a G-tube. Her nasal airway is very small and she has a hard time breathing, so she has a vent. So, she came home with a handful of machines and a trach, a vent, a G-tube, and now she is just thriving. It's just been amazing to see her journey from where we started to where we are now. Oh, my goodness, if I could have told myself from day one that "everything is going to be okay. Things are going to be hard but you're going to get through it. You have all the tools in you to survive and to make it as a medical mom," I would have just been able to breathe. Those first handful of months, they were hard.

Madeline Cheney  3:25  
That resonates so much. If only you could show yourself a glimpse of what life is like once you adjust and what your child is like when they're thriving, it would be so helpful. Unfortunately, we can't do that, but that would be so cool.

Falesha Johnson  3:43  
I feel like people try to tell me, "You're strong, you got this," and in that moment I was like, "I don't want to hear that. It's a lot for me. I want to feel the emotions I'm feeling right now." To see, like you said, a snapshot of it, to see as whole and her enjoying things that your typical kid would enjoy, I definitely would have been like, "Okay, I just have to get to that point. I just need to keep grinding and just keep pouring love and attention into her and we will get there on her own timeline." And that's something I've definitely learned, is that our kiddos, they are resilient but they do things on their own timeline, and it's made me have to remove myself from what other kids are doing, that aren't going through what she's going through. I compared everything so much. It was like, "Oh, well this kid has pfeiffer syndrome too and they're walking and talking," but her story is different and that's totally fine.  

Madeline Cheney  4:38  
I totally agree. I think that is something that all of us parents need to come to terms with at one point or another. And the sooner we do, the better things go. I think with a lot of the testing and things, and I believe Cali's in early intervention and therapy, even things like that makes you feel like it's your job as a parent to get them to those milestones, like, "What are they not doing? What do they need to do?" Instead, we just need to relax and enjoy them, like you said.  

Falesha Johnson  5:10  
So true. You put together these goals, for example we had goals to have her just sit up, and that was one of our big goals. I wanted it to happen as soon as possible so I'm doing all the steps, and it took her about 11 months, 10 to 11 months to sit up on her own. You see these little sheets of what goals kids are hitting each month, and it's like, "Okay, just sit up by six months." And to me it was like an endless comparison. So, I definitely felt like early intervention has been great for us but it's made me have to slow down and enjoy the little moments. We definitely celebrate small wins. She sat up for five seconds. That's amazing! 30 seconds. Yes!! So, she's taught me so much. I don't know if that's been for you, too, but I'm a totally different person than I was before I had her. 

Madeline Cheney  6:06  
Yeah, I would love to get into that. So, you say that you celebrate the smaller milestones that maybe we would overlook if they were typically developing or didn't have all these hurdles to overcome? What are some other ways that you feel like you've changed because of her?

Falesha Johnson  6:22  
My strength has changed. I thought I was strong before, and to go through having your child go through surgeries and to battle through them, I'm like, "Wow, she's so resilient. She is strong." I'm just an advocate for her and her cheerleader, and to see her overcome so many obstacles, it makes me kind of sit back and think that some of these things that I'm stressing out about don't matter as much. Seeing her thrive is what matters to me. I definitely realize how strong we are, prioritizing what's important is key, and realizing that it's not how quick she's doing something, it's just the matter of the fact that she's actually overcoming some of these obstacles that we maybe didn't think she would before. I slowed down quite a bit and dropped other passions of mine and redirected it. When you become a medical mom, you start to realize the support system out there is not as strong as you would like it to be. You don't see a lot of women of color out there, you don’t see parents with pfeiffer syndrome, and that was one thing we noticed is, as we found out she had pfeiffer syndrome, we were looked to Instagram and social media, and we didn't see a lot of representation of families that looked like us. So, we wanted to share our story, and through sharing our story, we've seen other parents reach out to us and say, “Wow, I want to share my story too.” There's a different culture when it comes to talking and sharing your kid and an understanding that they could be inspiring others. So that's definitely a passion shift of mine. I was so focused on, like, I do fitness training on the side, and I still do a little bit of it, but now I'm really into advocating for other families who have kids with medical needs. Using my YouTube channel to share things like our nurse's story, what home health looks like, etc. In those different ways that other parents can lean into and realize, it's going to be okay. Seeing where we are a year and a half later, if I would have seen my channel or my page, I would’ve been like, “oh, wow, okay, I can do this.” 

Madeline Cheney  8:37  
I think that's so cool. To look at it as a need that you had, like, “I'm going to fulfill that for someone else.” Even when you talk about seeing other families that looked like yours, like you didn't see other families of color and so that probably would’ve been harder to really see yourself in them. So, to be like, “Oh, here's your snapshot of the future.” I'm sure that's probably been really helpful for a lot of people. I also wonder, and I think that pretty much all of us struggle with this to some degree, but with Cali and other children with pfeiffer syndrome, a lot of facial features are very different than what you see in ‘typical’ children. Do you feel like your perception of beauty has changed? How has that evolved for you? 

Falesha Johnson  9:38  
Yeah, definitely. I feel like it's harder when it's your child and you want to protect them from everything. With Cali coming into this world during the pandemic, it kind of slowed down the process of us having to deal with the reality of the facial difference and what people would say. We shared her and our story on social media because we wanted to speak about facial equality and get that out there, and build that confidence in her by seeing that we're carrying on, we are proud that you are our daughter, we are going to show pictures rather than shielding her and not showing her off. So, we show her off proudly. I feel like that's an important part for other families to see, that we are proud. And, as you were saying, understanding that different doesn't make it worse or bad. I feel like sometimes we do think that like, “Oh, that individual looks different from us. They're not equal to us.” However, there's so many differences that we all have, from skin color and ethnicity, to religion, etc., it just goes on and on. So that's just one bucket that she has, and we wear it proudly. So, as the world is opening up and we're around more people, we are getting some stares, and it was hard at first. I had to slow down and realize that people just aren't educated about it. They're looking and they they're not really aware of pfeiffer syndrome. It's one in 100,000 individuals or kids are born with it. It's a very rare genetic disorder. And people are looking, and she has her machines and it's really loud, there's a trach, and sometimes we feed her in public. There's just so much going on, and I think people are watching and taking it all in rather than staring like, “Oh, what is that?” So, to change that narrative, my husband and I have just been so vocal about it in trying to raise that awareness for her. I've talked to other parents and they have shared that, as they get older, it does get hard. Kids can be kind of hard on each other. Right now, she's totally clueless to everything going on but there will come a time when she's on the playground and someone might say like, "Why do your eyes look that way?” And for us it’s like, we're trying to show her that example of, when people ask us that, they should ask us with respect, and to kind of change that question to like, “What happened to her?” It's like, what is she going through in order to educate them in that response. 

Madeline Cheney  12:29  
Yeah. I think this is something that pretty much all of us are either in the middle of when they're older, when they noticed that other people might be staring at them or asking them these questions. So, we're either in that mode, or like you and me, we're bracing ourselves for that because he's three and so he doesn't really understand that yet. It's this, like, "Oh my gosh, I love my child so much and the world cannot perceive how wonderful they are, as a parent can."

Falesha Johnson  13:07  
It is, and we get people reaching out to us, like, “Why would you do that to your child, and as far as share her?” And I'm just like, why would you say that? But I feel like we are teaching our friends and people out there to share her story and to be educated on her syndrome, so if they were to see someone with pfeiffer syndrome out there, they'd be aware of what it is and know to treat them with respect and be thoughtful in their approach. My husband I think about that often, of the years coming up, of bracing ourselves for that. My husband has autoimmune disease, but it's invisible. The difference of having something going on with yourself that's invisible versus something that's very visible, and the difference for that of how people treat you. And unfortunately, kids and people who see Cali think that she's incapable of doing a lot of things because of how she looks. When they see her moving and walking in her gait trainer and eating, they're like, “Wow.” I've had people reach out to me like, “Wow, when I first saw her, I felt sad. I thought, what kind of quality of life is she going to have? And as I fell in love with your channel and started watching more and more, I was in awe of all the things she can do. And I hate that I even thought that because of how she looked. I thought she couldn't do standard things.” And people ask, “Will she ever talk? Will she ever walk?” Now they're seeing her do some of those things like, “Oh my goodness, thank you for sharing that story because I'm seeing that she's a living testimony and to never count someone out with a disability.”

Madeline Cheney  14:56  
Yeah. I think a lot of that is internalized ableism that I think even us, as parents, go into the parenting experience with. We get these diagnoses, either when we're pregnant or afterwards, and then we're kind of like those people, like, "What kind of quality of life is that? Will my child be happy? Will they thrive?" because in our experience, my life looked like 'this, this and this,' and that's not what my child's life is going to look like, and I was happy. So, I think it's how our culture and our society has been trained to think, but seeing these kids and seeing how happy they are or unhappy, just how human they are, is so important. I wonder what that was like for you. You mentioned earlier that you found out that she had medical issues just before you delivered her, at like 37 weeks. What was that like?

Falesha Johnson  15:59  
Oh, I got to go back and forth. Like, was it a pro, was a con? I went in for my 36-week checkup and in that checkup, we were just going to see how much she weighed, what her position was, and everything was going smoothly up into that point. Passed the glucose test, I was gaining weight, I was a little more than what the doctor expected, but I was still working out. And they saw that I had a lot of amniotic fluid still, like, "Okay, well, you're about four weeks to being due so it should be dropping off." I think the number was 28, and they were like, "You should be in the 10 to 12. And I'm like, "Whoa, I'm a lot more." So, I went to see a specialist, and in that appointment, the energy changed. Every appointment I had, it was like, "Oh, look at her face and look at her feet." She was so quiet. She was taking pictures and she was just looking at her anatomy, and then the actual perinatologist was going to come in and explain to me what they saw. And she was super quiet. I didn't know what I was looking at on the screen. Then she left the room and she was gone for about 20 minutes. And I was like, this doesn't feel right. Then the doctor came in and she started to redo everything, like doing the ultrasound again, and asked me odd questions like, "Do you feel like you're a little heavier than you should be?" and "How have you been feeling?" and I'm just kind of like, "Get to the point! Tell me everything looks good." My OBGYN had said like, "Oh, there's three different buckets, it can be really serious, it can be just nothing, or you could just be someone who just happens to have more fluid and that's just standard." So, I thought I was going to be in the other bucket, I'll be fine. And then she started saying like, "Well, I see an opening in her spine. And I see fluid on her brain." And I'm just like, "What does all this mean?" She actually thought Cali had spinal bifida, which is like a paralyzation of the legs. I thought that was wrong because she was kicking and moving so much. Like, "That's odd." And then she was like, "Wait, no, that looks just like a little dimple." She was just spewing out everything in her head and she wasn't taking the time to think through like how she was presenting this. It was the worst experience I've ever had with a doctor. She mentioned that her eyes looked a little big and a little closer together. Then she looked at my husband and looked at me, and she said, "Oh, don't worry. If I look at you guys. Sometimes it's just genetic." We were like, "Did you just say that one of us...?" My husband's like, "What does that mean?" And she goes, "You would be the one that asked me that." It was so offensive and I left in tears. She said that I should have a C-section and didn't give us any actual answers. So, I was just like, "What just happened?" I had an appointment the next day. I went into that appointment with my OB, I walked in, and she's like, "Can I give you a hug?" And I thought,"...what?" Like, "What does this mean?" She's very chill, she's never super emotional and I just broke down because I knew that she was going to tell me some bad news, or just news in general. And that's what she told me like, "I see craniosynostosis, which means abnormal head shape, fusion of more than one of her plates in her skull and fluid on her brain." And I was just sitting there and she said, "I think she might have one of those syndromes, like pfeiffer Crouzon," and all this was so new to me. She kind of thought she was giving me an update from what I was told the day before but that doctor didn't tell me any of those things. She let the OB tell me everything. So, she didn't realize that she was breaking news to me. So, I'm hearing this, and like, "What does that mean?" So, I got a second opinion. So that's one thing I advise everybody, if you are in a situation with a doctor, and you don't feel comfortable, I should have left. When she insulted us, I should have got up and left. When she just didn't handle us professionally, and to find out that she withheld certain information from me and didn't tell me what I came to her to see, as a specialist. So, I got a second opinion. In that appointment, they handled me with respect. They walked down everything and they said, "We see these three different things. And because we see all of them together, we are 90% sure that she has Pfeiffer syndrome." They gave me a genetic testing, explained to me the process of it. They also told me that she'll probably have multiple surgeries. In her first year of life, they prepped me for it, they said, "You can have a vaginal delivery, you do not need to have a C-section." I'm like, "Oh, wow." They just educated me so much. I'm so thankful that I went to that new hospital. So within about a week, I changed hospitals, I left that other hospital, I said, "No, not delivering with you guys." They told me, "There's a great chance that she'll have a hard time breathing when she is delivered so we need to have a neonatal team right there. You're probably not going to have the typical experience where your child's born and then they get to have skin to skin. She's probably going to be at a point where we're going to have to figure out next steps on how to help her breathe." And so, they asked us, "If there's a situation where we are having a difficulty, do you want us to proceed?" It was so much emotion that I felt like I didn't have any time to process anything. It was happening so fast. And looking back, I'm like, oh my goodness, that was so much built-up emotion. I was so focused on, how do I get her to this world as safely as possible, and just do my job. I felt like she could feel everything I was feeling, so if I was overly sad, then that was going to impact her. So, I tried to keep my spirits up. I ended up having her vaginal delivery, she came out, she had a handful of soft spots. And that's one of the miracles for her, is that her head fused in my womb and her brain wanted to grow so bad, that multiple of them opened up. So I was able to have her vaginal delivery, she came into this world. She did have a hard time breathing and we had to intubate her right away. She was off to the NICU, went to a different hospital, and I think, once I delivered her, all the motions hit me. What our world was going to be like, I think we were still holding on to, maybe it will be a mild case of pfeiffer syndrome. Maybe she won't need a trach. Maybe she can come home within a couple of days. And we kept asking everyone at the NICU, "When do you think we can go home? How long do you think we'll be here?" And they said, "For a while." And I was like, "What does that mean?" "You're going to be here for a while." I was like, "Okay, let me get prepared for that." So, I feel like our whole early journey was just this unknown. It just hit me hard. At 37 weeks, officially knowing that she had pfeiffer syndrome and kind of thinking that you're going to have one type of birth plan and one type of pregnancy, and then to quickly to switch to be high-risk and have to be flexible with that. That was a lot of emotion, a lot of change in such a short period of time for us.

Madeline Cheney  23:41  
Yeah, that must have been so much to take in. I imagine that that really rude doctor, I mean, the timing of that, right? When you're getting this news and not really getting news because it's just that, "There's something wrong but I'm not going to really tell you what, I'm going to guess a ton of different things." I bet that just exasperated all those scary emotions, and what a relief to get someone who actually knew what they were doing and were respectful about it. I'm sure there were so many emotions during that time.  

Falesha Johnson  24:15  
I think that was my first time learning how to advocate for my daughter and myself in a healthcare setting. I've continued to have those kind of situations, not rude doctors like her but having to say, "No, something's up, something feels off." And in that situation, I took some time and focused on Cali. And then once she was born and we got home, I filed a complaint and I'm kind of in that process of like letting them know how you treated us in that process. You could have handled it so much better. If I would have stuck with that hospital. I wouldn't have known her syndrome; I wouldn't have been mentally prepared going into my delivery. There's just so many things that in hindsight, I'm just like, "Wow, you guys really failed me." And I know there's other moms out there that have had similar situations, and other kids with pfeiffer syndrome. It's all about the ultrasound and the head shape, but I know moms who found that out at 20 weeks and carried that for the last 20 weeks of this unknown and anxiety, and they said they could not enjoy their pregnancy. It was so much sadness and anxiety of, "What's going to happen?" And then you go to Google, you go online, you look it up, and it's just the worst. I have my doctor from day one. He said, "Please don't look this up." I said, "Wait, what??" "Don't look it up."

Madeline Cheney  25:40  
Did you do it? 

Falesha Johnson  25:41  
I did.

Madeline Cheney  25:42  
I was like, how could you not? No parent could do that.

Falesha Johnson  25:45  
And he's just like, you're going to see all of the worst-case scenarios. And here's another miracle in itself. So, we're located in Seattle, and Seattle has one of the top hospitals for cranial facial syndromes. They see about 150 kids a year, and some of your other hospitals see about three to five. There are only like four other units that are top in the country, and for us to be 40 minutes away from there and to have that type of care, it was just phenomenal for us, we knew we were in the right place. But what he shared is that there's been so much research and so much done over the last two to three years, that what you see out there is pretty outdated. Sometimes what makes it to the articles they post and things on Wikipedia, everything like that, it doesn't get updated as often. So, he was trying to explain to us, "You're in the right place, we're going to take care of her." And they do things very proactively. So, kids have a hard time developing mentally and cognitively because of the pressure that's put on their brain. Their brain is continuing to grow, and I think it's 80 percent grown until you're two. So, it's continuing to grow but your skull is fused. So, your skull is not growing, it's putting pressure while your brain is going this way. What they do is they get in front of it. They open up, they do craniectomy, it's almost like a bottle, like you pop open the bottle and it breathes. And so, your skull can regenerate the bone. Over time, the goal is for her brain to grow at a faster rate than the bone is growing back. It's opening up, and then the bone is regenerating. And that gives her centimeters of space. And then we do that again, and you keep doing it until about two, when the skull is pretty much the size it's going to be and so your brain stops growing. So, I've learned the process, but our hospitals get in front of it, we do it for weeks or months and we react to the child rather than be on this timeline. So, you saw some pretty poor prognosis to certain syndromes because they were so stuck on doing it for a set period of time, but you can't reverse some of the damage that's been done on a brain. If it wants to grow and be healthy, it needs the space. Pressure is going to default; it's going to go backwards.  

Madeline Cheney  28:14  
Wow. So, you have some really good advice in there. When you said to get second opinions, and if someone's listening right now, and thinking, "Well, my child has cranial facial differences. Maybe I should get a second opinion at Seattle Children's Hospital." I'm kind of thinking that right now because my son does. So, I guess to wrap up, what advice would you have, if you picture parents listening right now, maybe earlier in their journey or maybe further along, what's your number one piece of advice?  

Falesha Johnson  28:51  
My advice for new parents hearing that news would definitely be to take a deep breath. I leaned on my partner. My husband and I had this conversation of, we are in this together and we're going to do whatever it takes to get our child here, safely, and into the next stage. So, we researched, and I know they say to not Google, but we wanted to be as educated as possible about everything coming up. We took notes from the doctors, and if they were saying one thing, we're like, taking notes and following back up, like, "You said x, y, and z," and if we didn't feel comfortable with a doctor, we spoke up and said, "We're going to go this direction." You can do that, and we had to learn that the hard way. You can advocate and you can switch doctors if you don't feel comfortable, but definitely get a second opinion and find the specialty. If you can, going into somewhere that has hands-on and high experience in your child's syndrome is going to be the best for their future. So definitely find those doctors that are experts in that syndrome. Talk to your partner about your plan together because hearing that news is emotional, and you need to have that support, that strong support, whether that be family, or your husband or a wife, and then being as educated as you can. If your doctor says don't google it, ask, "What's the best piece of education out there that I can learn from?" Our doctors had research articles and they were like, "Here, do this, don't read Wikipedia, read this source." So that's why I asked him, I'm like, "Okay, if you don't want me to go online, where?" He gave me a stack of papers, and I read through them, and I was like, "Oh, okay, I feel like I have a good picture of the future." That prepped me for the weeks of months to come.

Madeline Cheney  30:51  
Yeah, I love that so much. So many parents I talk to, especially on here, when they're telling their story, they say their doctors said, "Don't Google it." And they go home and Google it and get freaked out. I love that, where it's like, "Okay, if you're going to tell me not to Google it, then I need to know what's going to happen. Tell me where to look to." I just keep thinking too, when you're talking about the outdated research, or the scary things on Google, or even these research papers, I keep thinking, if a family gets a diagnosis of pfeiffer syndrome, obviously it's good to know the medical stuff, but to have an idea of what your life's going to be like, like your Instagram account and your YouTube channel, things like that, of being able to find other parents that are in the trenches dealing with it can be so helpful, right along with the medical research if there is any on your child syndrome, it's so valuable. So, I'm sure that has been just such a motivator for you.

Falesha Johnson  31:50  
It is, and that's what my husband did. I feel like we are such a great team, where I need to read everything, and my husband was like, "I can't. I can't read everything. I need to see the families." So, he went on Instagram and found families and connected from like, day three of knowing that she's going to have pfeiffer syndrome, and they are still in our lives. They have been so amazing because there have been different points on our journey where, maybe she had a surgery and she responded poorly to it, and our doctors were telling us, "No, that's standard. That's just what happens." And families were saying, "No, that's not okay. That did happen to ours. Not saying it can't happen to yours but hey, don't let them tell you that this is the typical trajectory." So, they helped us get that confidence of like, "Nope, we're going to go back and question. Let's go through the line because something's going on." So, it was nice to have that dual of like, he is the art side and I'm the science side and together, I was like, "Okay, Rome. This is what this means." And he's like, "Okay, but I've seen it in real life. This is what this means."

Madeline Cheney  33:05  
So awesome. What an awesome team. I just love picturing you and Cali and Rome, all together navigating this and figuring it out and helping other families. You guys are just awesome. Thank you so much for sharing your story and your experience with us. It's been so valuable.

Falesha Johnson  33:27  
Thank you for having me and giving me a platform to share my story. I appreciate it.

Madeline Cheney  33:34  
You can head to the website, The Rare Life Podcast.com to see adorable photos of Falesha and her family and to answer this month's question. There will be a link for the website in the show notes. You can also find links to find her and me on social media. Join us next week for Falesha's special topic episode, All About Living Life with a Machine-Dependent Child. She has some really great stuff in there and I enjoyed that conversation even more than this last one, so don't miss it. See you then.