Crystal M Williams

Disability Advocate, Writer, Blogger, Kabuki Syndrome

Living with Kabuki Syndrome

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Hi Everyone, 

It’s been a couple of months since I did my last post. I have gotten a lot of great feedback  on my blog posts lately. I have been having a hard time trying to think of how i’ve wanted to write this post but i have realized that the only way i can write about it is being very honest. So here it goes.

As you all know i have a disability & a syndrome called Kabuki Syndrome. When I was born I had a cleft palate which for those of you don’t know what that is it’s a hole in my lip. When is was three months old I had my first surgery to repair my cleft palate. When I was eight months old I had my hearing tested & turns out I had a moderate to severe hearing loss & I still do today. So I started wearing hearing aids when I was nine months old. Over the course of my life I have had twenty three different surgeries growing up. Along the way i’ve also had balance issues so that’s where the therapeutic horseback riding has helped me. I was three & 1/2 years old when I started doing the therapeutic horseback riding which has helped me & has completely changed my life for the better. I also had a couple of seizures when I was very young but I haven’t had any anymore seizures since I was 4 & 1/2 years old. From my cleft palate to having seizures that is all connected to my Kabuki Syndrome. Over the years of growing up with my disability & my Kabuki Syndrome i have tried to do everything in my power to forget about it & even try to deny that i had a disability & a syndrome. I had a very hard time with school because I was very different than everyone else around me. Growing up I was bullied by people because I looked different on the outside & I also had a hard time with keeping up with my school work. One thing that I’m very grateful for is that I had a couple of great friends who i am still friends with today & i don’t know what I would do without them. They didn’t care that I looked different or had troubles with school work. They loved me for me & i’m so thankful that they are still in my life. Once I got out of elementary school & moved up into high school things did become more challenging for me. I was still being bullied by students but I also had teachers that didn’t respect me & just would not listen to me which made things very difficult for me. Throughout my high school experience I just started to give up & kept a lot of my anger bottled up inside. The only good thing for me about high school was meeting my now fiance Matthew. I did go through counseling for many years to help me which did help me a bit. When I was in Grade twelve that was probably one of the hardest years of school in my life. I really struggled with school because the teachers really didn’t respect me at all. I did try to commit suicide because i was at my lowest point in my life & i just didn’t see why i was worth being here. I did really scare myself & everyone else who loved me especially my family & Matthew. So when my family found out where I was at the time. I started going to counselling a lot more,  seeing my doctor because I was really depressed & had to start taking medication. Once i had graduated from high school i needed to take a year off from school because i just really needed a break from it all. So i decided that i was going to volunteer more at my riding stable Valley Therapeutic Equestrian Association. Things started to turn around for me a bit because i was in a place where i felt like was appreciated. I loved being able to help the other riders there that needed the support because i know i was one of them when i was younger & i could never thank them enough for helping me become the person that i am today. Once the year was up i did try to go back to school in a program for people with disabilities in a university program which i wasn’t happy about going through it because again the teachers at the high school who did not treat me very well thought it would be a good idea for me to go into. I did get into the program & decided that i had no choice but just to put my guard down & to give it a try. So for the first week things were going okay but than once I tried doing a work experience outside of the classroom that’s when things became challenging for me. Long story short I did talk to my parents & got their support to try something different because school was never easy for me. So I did do an online course instead for photography & I loved it. I tried starting up doing photography for a business but it didn’t go as i thought it would so i tried some other jobs instead. 

Now fast forwarding to now. Last year was probably another horrible year, From losing my beautiful sister in law, my aunt & my great grandmother all in the same year. I haven’t felt so depressed since i was in grade twelve. The things that has helped me overcome all of this is going to see a psychologist, upping my medication, doing horseback riding & being able to volunteer where i ride. I have learned that i cannot change who i am because of my Kabuki Syndrome & also my disability. I’ve honestly have never felt this good in life. I have learned to only keep the good people in my life that make me feel happy & not the people that are so negative. who put me down I’ve also learned to do what truly makes you happy & healthy. Having a pet around has definitely boosts my mood. Having amazing family & friends who truly loves you for who you are is also the main key as well. You only have one life to live & trying to be more positive has definitely made a huge change in my life as well.  For those of you who are like me who have Kabuki Syndrome i do know that life can be challenging but it’s all what you make of it. There is a light at the end of the tunnel never try to change who you are & just embrace your Kabuki Syndrome.

Well that’s all for now I hope you all enjoyed reading this as i’m trying really hard to keep it together as i finish writing this. 


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