Part 4: Patient’s Perspective

When did you first notice your cleft and how did you feel about it?

My family and I always laugh at this question because the first time I ever realized I had a cleft was when I was in 4th grade. Like how did I not know before?! The reason we find it so comical is because most would think that with all my surgeries and years spent in speech therapy, I would have realized that there was something a little different about me. But nope, I didn’t! My parents NEVER once made me feel different. My mom always told me I was born “perfectly imperfect” ;) and another surgery to us was just like another dance recital or baseball game.

 With that being said, when I was in 4th grade I heard a recording of myself and about died of embarrassment. I was so mortified and I remember thinking, “Okay there is something wrong with this recording because there is no way that is my voice…does my family know that I sound like this?” And within a blink of an eye all of the surgeries and all of the years of my mom taking me to speech therapy and making me practice over and over again-and definitely me fighting her on it- FINALLY made sense!! I finally knew why. In that moment, I instantly became frustrated with myself wishing I had taken therapy more seriously because that was the day I realized that all I wanted was a different voice. 

I don’t know how my parents did it but I am beyond grateful for how they raised me. They always reminded my siblings and I that inner beauty is much greater than outer beauty. I am in awe of how they made it look so seamless on the days that were challenging. Never once did I doubt that I wouldn’t be getting the best surgeon(s) or the best care; because my mom was, and is, resilient. There was so much comfort in knowing that she wasn’t going to stop until she got the “best of the best.” My mom always said I was the strong one, but in reality she always has been the strong one.

What was the hardest part of your journey?

When thinking about my journey, I cannot begin to thank my family for always encouraging me, supporting me, and loving me unconditionally. They never focused on my imperfections but always embraced my “squishy nose” and my “shark teeth.” They continuously told me how beautiful I was; especially on the days when I felt ugly. 

I would say the hardest part of my journey was when I was a junior in high-school and I had jaw surgery. My mouth was wired shut for 2.5 months and it was the 19th day of me living off smoothies and puree foods; and I finally hit a wall. I was extremely frustrated because I couldn’t eat, I couldn’t talk (unless it was on a white board), the liquid antibiotics tasted like pure poison, and I was in an immense amount of pain. I remember lying on the floor filled with tears and I was having a complete meltdown. I was so frustrated because all I wanted was to feel and look normal. I remember looking in the mirror and feeling so unattractive. As if high-school wasn’t already awkward, my surgery did it not make any better. I weighed 85 lbs, my head was the size of a basketball, and my face was completely swollen. During my meltdown, my family just let me have my moment.  I rarely ever complained about my surgeries but in that moment, I think we all realized that I was over it. I was over my surgeries.

However, reflecting on the past 27 years, I have realized that when you are born differently, the “hard part” of your journey really never goes away. You just learn to overcome the obstacles and begin to face the new challenges that come your way. In my adulthood, I would say that my hardest part is remembering that I am worthy enough for my career. Most importantly I am able to relate to my patients/clients in ways that other clinicians might not be able to understand. What always got me through the days when I felt down was remembering that someone else out there was going through something far greater than what I was. For me it was the best way to remind myself not to ever feel sorry for myself and that my “disability/difference” wasn’t going to inhibit me. It made me completely thankful for the surgeons and the team that I had.

What is something about your journey that might surprise people?

I would say one of the things that would surprise people the most about my journey is that I am now a Speech Language Pathologist. Growing up, I always wanted to be a nurse, but God had a different plan for me. Being able to be in a field where I have been on both sides of the therapy table has been the greatest blessing. Whether it is in the schools, hospitals, or private clinic, I love that I get to give back to the community that shaped me into the person I am today.  Therefore, my next step in my career is that to be apart of the Children’s Hospital of Orange County (CHOC) Craniofacial Team so I can work alongside some of the most well respected professionals in the Craniofacial world (thank you to Mary Warden, Dr. Nisco, and Dr. Urata). They are the ones who gave me the extra confidence I needed. I want to be able to be the Speech Pathologist that gives hope and guidance to the families and individuals who are struggling.

Were you ever bullied or teased?

Fortunately, I never dealt with bullying or teasing but I always get the occasion question(s), “Why does your voice sound like that?” or “What’s wrong with your voice”? But the question that always makes me laugh is when people assume I just have a really stuffy nose and ask if I am feeling okay….. Sometimes I ignore the question and sometimes I feel like just giving a sassy response. 

Occasionally, when talking  to others, I will notice people will either look at my lips in confusion but when that happens I am just reminded that they haven’t been exposed to someone with a cleft lip and palate and they are unaware of my journey. I believe that my disability has turned me into a strong, empathetic, and determined person. On the days when I was outcasted by others, those situations have turned me into the person I am today. 

How can we best educate children to treat those who are different from themselves with kindness and inclusion?

I would say the best way to educate children is to keep them informed. When I was in 4th grade and had my bone graft surgery, my mom went in and talked to my class to let them know that I was going to be out for a few weeks. I remember feeling so embarrassed because I didn’t want anyone at school to know what I was going through or ask questions; I wanted to act like nothing was wrong. However, it was the best decision that my mom made because it allowed my classmates to really understand what I was going through and ask the questions that they wanted to without making me feel uncomfortable. Also, the transition process of going back to school was less daunting because my classmates truly wanted to know how I was recovering. 

I believe that the more children are educated and made aware that everyone is born differently, that is when kindness and inclusion can really happen. When teachers incorporate activities that focus on differences and encourage students’ to have open discussions then they become understanding and empathetic. It also makes the individual who feels outcasted to feel normal.

What advice would you give to your younger self?

To not fight your mom on going to speech therapy hahaha! But all joking aside, I would tell myself to remember that every step, every surgery, and every obstacle is truly God’s plan. All of the challenges are just stepping stones to allow yourself to be exactly where you are today and where God wants you. There were several times throughout my life where I would ask God “Why me?”, “What is my purpose?” and “Why was I born with a CLP?” and even though I am still navigating my purpose in life I know that I am currently exactly where I want to be.

What do you wish people knew about people with cleft lip/palate/other craniofacial differences?

I would say I wish more SLPs knew more about how to provide therapy to patients with craniofacial anomalies. The anatomical and physiological part of individuals with cleft lip and palate is so intricate and complicated, therefore, speech therapy is a crucial piece to the puzzle. It takes more than just articulation drills in order to correctly produce certain sounds. It takes understanding how every articulator works together in order to produce words, phrases, and sentences. 

Also, I do wish that in general, people knew more about the internal effect a craniofacial anomaly has on someone. It is more than what's on the outside, but about what is on the inside. Just because a surgery is complete doesn’t mean that your “disability” is fixed. There is a physical, emotional, and mental component that goes into being born “perfectly imperfect”.

Thank you for following along on this four part series with Lisa and Allie Stout. If you have any additional questions, please leave them below for Lisa and Allie to answer!

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