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!
For months I’ve been trying to find something that I could write about. There’s been a lot of changes going on with my life and I think just to be safe, I haven’t written about it cause I wasn’t sure how it would turn out! Needless to say, since I’m actually officially engaged, I think it’s time for me to introduce to you the love of my life: Zackariah. He’s someone who loves me with everything and I him; He makes me laugh and smile on the cloudy days. If you follow me on social media, Zack’s face is pretty familiar to you.
A little about Zack and me. We both are PK’s (pastor’s kids), we both love to laugh and have fun, we love traveling and exploring new places. There are so many little things we have in common it’s hard not to have fun when we’re together. I’ve always wondered (and I’ve talked a lot about it) about if I’d ever find love because of Kabuki syndrome. I talked about it a lot, I expressed my concern and fears. Here I was nearing my late twenties and still wasn’t close to being in a serious relationship. It’s funny I’ve always heard that someone comes into your life when you weren’t expecting it and it’s exactly what happen in this situation. I had laid down my fears about being alone or ever being loved by someone and in comes my guy.
Oddly enough Zack and I met online. I was feeling like I had to broaden my horizons in the dating arena. I didn’t have much luck in my social circles--and I think it was a little awkward being the pastor’s daughter with all that goes with that. I just was looking for someone who would be interested in getting to know me for me, didn’t know about my family, the church or even the dreaded subject of kabuki syndrome at first.
Last year I had to break it off with someone because it just didn’t seem right and that left me alittle confused and heartbroken. When Zack contacted me online the farthest thing from my mind was to start that all again. But I felt comfortable and had a peace with him. Zack and I took our time getting to know each other and building a friendship. We would write these long massive emails that turned into texts that could be probably published as novels and then came the phone call! That phone call that lasted 3 hours. By the end of the phone call we were talking about him making a visit from where he lived in Oregon to Santa Rosa where I live.
I was scared out of my mind leading up to the first visit. There many late nights on the phone with Zack talking about our hopes and our fears. The day finally came where Zack flew into the tiny Santa Rosa airport. I was waiting in baggage claim nervously but the moment he came up behind me, tapped me on the shoulder and I turned around all that nervousness and fear disappeared. It was like we had known each other for years, even though it was only a short time. Zack’s visit lasted two days but it was evident that there was something between us and that we would be foolish not to take the opportunity at a chance at love and happiness. We didn’t know how this long distance thing would work but we’re going to give it our best shot. Thankfully because he works for an airline our long distant relationship wasn’t that long distant at all. We would take turns going back and forth from California to Oregon.
I knew from the very beginning that this relationship was different-- something clicked with Zack and I that wasn’t there before. I’m not going to lie and say it wasn’t the scariest thing I ever faced because it was! I mean we were talking forever, this may just be the one, was he the one? I really struggled with if he could even love me despite my Kabuki Syndrome, did He really want to take care of someone who had a syndrome that didn’t have a cure? Every single time I brought up my fears Zackariah would always without a doubt say the most loving, caring things and always end with “Jordan, ALL that doesn’t matter to me. I’m falling for you and I just like you for you”. That right there was what I was searching for this entire journey for someone to see me as Jordan, not Jordan the daughter of Pastor Ross and Barb, the sister of Zack and Peter or even Jordan who has Kabuki Syndrome, but simply Jordan.
In February we started talking bigger things like marriage--where’d we live and all that. We really wanted to live in the same state while being engaged. I was fairly certain a ring would come before June of this year but I didn’t want to put any more pressure that was already on him. In March a position opened up at the Santa Rosa Airport and Zack took the opportunity and applied. The very next week he had an interview with the manager here in Santa Rosa. He came to see me for a couple days before the interview. The day before his interview after a crazy filled day while standing out overlooking the view over San Francisco Zack got down on one knee and asked me a question I’ve waited all my life to answer. Right there in that moment I was reminded of God’s faithfulness. He had brought me the one that He created for me and His perfect timing. The very next day after he proposed, Zack was offered the job here in Santa Rosa and packed up everything in Oregon and moved out here all in 2 weeks!
To say the last month has been crazy and overwhelming would be an understatement but it’s been beautiful. We love being in the same city! To be able to get the chance to see each other every day whether just hanging out at the house, going around town doing errands or making dinner for him when he gets off work. It really is the simple things that we weren’t able to do together that bring us so much joy in this new season.
Wedding planning is in full swing here! It’s been so surreal planning my own wedding but it is very much the real deal. We’re about 7 months out from the big day and as the day draws closer we are getting more and more excited about starting our new journey together as a couple. My prayer as you read this as parents of kabuki children, that you would be comforted by our story. As I have said many times life doesn’t end with a diagnosis of KS--there is so much that lies beyond that. It’s possible that one day someone will come into their life and love them just like Zack loves me. My lesson in this season is love is possible-- I just had to learn to accept myself and trust the Lord before it was the right time.
My Sweet Zackariah, welcome to the other part of my world! The place where I left a lot of my emotions and feelings, fears, etc. I found my voice on this blog. I discovered there was a girl with a story to tell and hope to offer. I remember the day I told you about this and how you could leave-- I wouldn’t blame you-- but instead you read the blog; you watched the YouTube videos and everything else. You didn’t run-- no-- you just wanted to know more about me and called me incredible for doing what I was doing. You have supported me in everything and have loved me fearlessly. Our friends and family have watched our love story unfold and now we are sharing our story to the world of KS families.. I wasn’t expecting to find the love of my life when I answered your friend request but I am so very glad I did. Saying yes to marrying you was the easiest question to answer. You have made my life not only better, you have brought out the very best in me. My world forever changed the second I meet you. Thank you for loving the girl that wasn’t sure she could ever be a wive. You are the exactly what I prayed for! Thank you for opening my eyes to so many things. I didn’t think it was possible to love someone as much as I do you but every day that passes I fall more and more in love with you and everything about you. Our journey is just beginning and I couldn’t be more excited to do life with you. I can’t wait to become your wife someday very soon!
Loving you forever, Jordan
Why hello there! :) I know, I know I’m that horrible blog owner that hasn’t updated in months. I kept putting off an entry on here, promising I would do it next week, well next week turned in months of not writing on here. Sorry!! I promise I’m alive and haven’t forgotten about you guys! I can’t even believe it’s been 3 solid months since I have written on here. The last post was definitely a hard one to write but the response has been so overwhelming and so very appreciated from not only families with someone that has Kabuki Syndrome but others that don’t and just read my blog for insight. Thank you to all those who reached out to me afterwards and allowed themselves to be just vulnerable as I was. Your courage, words, insight and most importantly your love all were sweet reminders that this is right where I need to be.:)
The question I have been asked over the month or so is when was I going do an update on my life on here. I really didn’t know if that was something worth reading for you all but the same questions get arising so I thought this would be a perfect opportunity to finally post on here. Questions that have been the most popular have been How’s life right now for me, How’s my Dog Aslyn, What does the future look like for Kabuki Unfiltered, How’s the weight loss journey and where I’m at now on that, Has taking off weight helped any with my knees, Do I still struggle with Anxiety and what I use currently to help through it, Am I doing more speaking engagements?
Life right now is pretty great. Staying busy with my job as the receptionist still for the church my Dad pastors at. Enjoying the warm weather and really for the first time in my life enjoying being able to be active and confident outside. My sweet puppy Aslyn continues to bring so much joy and help with my anxiety. Aslyn turned 1 at the end of May. She is full of energy and curiosity that makes you smile, well most of the time. ;) Samson my kitty is still annoyed with Aslyn’s presence as the day we brought her home and Aslyn doesn’t quite get that memo, lol. Maybe someday… ;) But not to worry Samson still gets all the love and attention that a kitty could possibly want. :)
My weight loss journey has continued on since I last wrote. I have lost a total of 83 pounds and now have hit the point where I’m learning the balance of maintaining my weight loss. I stopped doing Jenny Craig at 45 pounds and did the 35 pounds on my own of just watching my calorie intake and what I actually eat and keeping moving. Still trying to get used to and comfortable with my new body but slowly accepting the hard work that I have worked so hard to get. I am continually and honestly don’t think I will ever stop learning that true beauty comes from within and not from what I see when I look in the mirror. Accepting that food and my weight will probably be something I deal with all my life but it can be something positive just like it is right now. The most popular question I get asked when people approach me is “You must feel so much better and You must not struggle with your knees anymore” and that’s a tough on to answer back. Do I feel better absolutely I do, Do my knees feel better yes to extent, Are they still causing me trouble sadly yes. I still have to be careful when I do go out and do active things that I don’t overdo it, that just because my body is saying I can go doesn’t mean my knees are saying go. There is no cartilage left on my left and hardly any on my right, they are just worn out and I don’t blame them, I have been through a lot with them. Not gonna lie and say it’s not frustrating though because it is, here I am wanting to actually do these things that in the past before my weight held me back hugely but now that it’s gone I’m ready to do these things I have missed out on there is still something holding me back. But though it may be frustrating and confusing I am still able to look at the situation and be extremely proud at where I’m at, I mean that’s 83 pounds lifted off of me that I am no longer weighted down with and if that’s not something to celebrate I don’t know what is.:)
If there is one thing I am proud of for Kabuki Unfiltered is that I have kept my life pretty open for the most part. I have done it that way so that those who have questions would feel comfortable approaching with questions. Some questions I have mentioned on here, some more private but still was answered through email or phone. It has brought me so much joy more than you all could ever think or dream of to know and finally experience that I’m needed or wanted. That being said the question that has been raised a lot is “How is your anxiety today/Do you still struggle with your anxiety like you used to?”.The answer to that question is yes, it’s still something that is there every day and I have accepted that it’s just gonna be a part of my life. Are there days that I wish I could have a break from it or wonder why some people only struggle with anxiety for a season or from time to time and not every day, yes but you know there is so much worse things that could happen that I would have to deal with every day. . So things that have really helped me recently other than my medication when my anxiety is bad is prayer, reading, getting out and walking, I know this sounds dumb but little puzzle games on my phone actually helps calm me down lol, to even just putting in my earbuds and listening to music that speaks to my heart and that offer the words in the lyrics that I’m having a hard time finding to express. So days all I have to lean on is Jesus and the promise that He hasn’t given me more than I can handle and you know that’s enough for me so days. So I’m grateful each day for the opportunity I have to live another day and embrace it as best as I can with open arms and move forward.
As far as events where I am speaking, I just had the opportunity to talk with families that attended the West Coast Kabuki Syndrome Conference in Torrance, California. It was such a beautiful event put together by Rick and Jodie Esponda. What made this conference so special to myself was that both my parents along with my best friend Amanda where able to attend this year with me. This was my Dad and Amanda’s very first encounter meeting someone besides myself with Kabuki Syndrome. It was such an eye opener for them and we all walked away talking about how special it was. It was such an honor to be able share my heart and my journey with families that are on similar paths as I am. Every time I attend an event where I am able to share or post a blog entry it makes me even more passionate about spreading the word about Kabuki Syndrome. If there is just one person in the audience that didn’t know something it’s one less person to add to the list of those who didn’t know. That’s what keeps is me speaking, writing, advocating, etc… So as long as there are people asking, discovering and talking than Kabuki Unfiltered will be here until the day comes where people stop asking “What is Kabuki Syndrome”. Another question is people asked when I am speaking next, there are some opportunities that are still being worked out but I will keep you all in the loop. People have also asked where I would speak, I always say I am open to share my story anywhere Conferences, Retreats, Schools, Churches, really anywhere. If you have desire to set up something feel free to message me and we can see if we can brainstorm together.:)
As I’m preparing to wrap things up with this entry I can’t help but think about the two year anniversary that just past of getting that phone call with the official news that I indeed had Kabuki Syndrome. Some of you are follow me on social media and saw the post I posted on the anniversary date. I had no idea what kind of journey I would be entering in that day, nor did I ever dream I would be public about it. Kabuki Unfiltered was not even a thought in my mind that afternoon but would eventuallybe born 5 short months later. The little blog that wasn’t supposed to have more than 100 views now is past 17,000 and now heading to 18,000 views before its 2 years anniversary start date. Just blows my mind that a broken, lost, lonely girl that was really considering her existence on this earth before that phone call receiving the news that should have wiped her out completely. I mean a disease that right now has no cure and that would lead her to finding hope, happiness and acceptance that she had never experienced and was desperately longing for. That right there is a miracle of God Himself folks. God truly uses our weaknesses to show Himself. If anything because I walked through those very dark moments I have more of a heart for those that are lonely, hurting and are label outcast because I have been in their shoes and I have found what they are searching for, a place of belonging, we all want to belong. I am so happy to tell you that girl found her place and its right where she belongs.
Until Next Time-- Be Blessed!
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