Kabuki Syndrome Awareness Day, a day a much younger Jordan could only dream about celebrating. A day that celebrates what makes me and thousands of others the way we are. I’ve written so many times of the loneliness I’ve felt growing up knowing there was something different about me and the feeling of not fitting in with my friends and even my family at times. Little did I know I just had to make it till I was 26 to see the LIFE that was made for me, the PURPOSE I had, and the WELCOME that was waiting for me. Never again after that moment did I have to ponder where I belong because it was right in front of me. In this beautiful community I found of Kabuki families struggling the same struggle my family had for years of trying to make sense of this rare diagnosis but one thing has changed for all of us, we are no longer alone in the journey. There is this bond that has been discovered, a lifeline for many and it all because of a word I used to be ashamed of Kabuki Syndrome. For the several months after I was diagnosed with Kabuki the very last thing I wanted to do was celebrate it. I saw it weakness, something that hindered me and although it kept wanting out under the rug I kept trying to sweep it under. I personally wasn’t ready. Why did I have to be different than my brothers and my friends my own age? I’m not going to lie I was confused and mad at God for allowing this to happen to me, I mean didn’t He see me? As most of you know a couple weeks later I stumbled upon that Kabuki Support Group on Facebook that wasn’t very big at that time, did I begin to see what I could offer these families that were filled with questions they had about their young child’s future. A couple days after I had joined the group the thought came to me that “How can I be ashamed of something that I am trying to help them with. What I’m saying to these young children if I’m ashamed of this?”. I started to begin see to why God had Kabuki Syndrome to happen to me because He had plans for me that were not my own. Standing with children who have this disability is something I could be proud of instead of feeling of loneliness and shame.
There are some many different roads traveled in Kabuki Syndrome and everyone is different, every path taken on that journey tells a story of bravery, courage and strength that puts the ordinary superheroes like Batman and Superman to shame. I would be lying if I said my journey with Kabuki Syndrome was a piece of cake and that there weren’t any problems, certainly not, but my road tells MY story. The story that I proudly can tell of courage to overcome what some people and at times even myself said couldn’t be done and to overcome so many fears, inspiration and hope that I’ve had the opportunity to share my journey with so many people Kabuki Syndrome or not.
There is so, so many things I can proudly celebrate this year. I celebrate the fact I’ve continued to live a healthy lifestyle and that it’s been a full year that I’ve successfully kept off the weight I lost in 2015. I made it two days in Disneyland for the first time without needing a wheelchair by the end of the trip. I’ve found and fell in love with the love of my life and next month my dream of becoming a wife to someone is coming true! I’ve was given an opportunity to raise awareness about Kabuki Syndrome by sharing my story through a social media site called Trende and so many other things I can celebrate this year! I thank you for coming along side my journey, for cheering me on and for believing in me and my heart that more people get knowledge/educated about Kabuki Syndrome.
No longer is Kabuki Syndrome something that has to hidden from everybody in my life. Through Kabuki Syndrome I have found my voice and have realized not only do people want to hear what I have to say. I’ve found confidence in myself that lacking. The most important thing I think Kabuki Syndrome has thought me to fight not only for myself but for those who simply can’t. Yes, I have Kabuki Syndrome but what’ve learned over the years is that Kabuki Syndrome doesn’t, nor will it ever define who I am. I am Jordan Reinman and I’m a daughter, sister, fiancé, friend, pastor’s daughter, someone who is genuine and kind, someone who is takes life lessons and uses it to improve her life and someone who lives life and the people in it.
So I invite you join my family, my dearly loved friends and myself on October 23 to CELEBRATE Kabuki Syndrome Awareness Day by wearing something green. Oh and if you wear green I want to see it so please take photos and use the hashtag #goinggreenforjordan. Thank you from the bottom my heart for being invested in this day, for raising awareness so that others who may have never known about Kabuki Syndrome now have knowledge. We feel the love not only on October 23 but every day of the year.
Until Next Time, Be Blessed!
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