Friday, October 14, 2016

Kabuki Awareness Day 2016

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, fiancĂ©, 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! 

Tuesday, June 7, 2016


Last month I was approached by a friend who runs a fashion website if I would would take part in their 10 items 10 outfits segment they do. Part of the segment involves sharing my journey with Kabuki Syndrome and where it has brought me today. I am so excited that today I get to finally show you the spread that was released. 
Thank you Hannah and the amazing team at Trende how gave me opportunity to share about my journey of realizing that there is really no label and how I am is enough! 

Saturday, April 16, 2016

Finding Love

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

Until Next Time---Be Blessed!!

Tuesday, July 7, 2015

This little thing called Life

 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 UnfilteredHow’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 lolto 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!



If anyone has topics that they would like to see discussed on here email me I would love to hear your input.

Thursday, April 2, 2015

"I did it for the kids....."

This blog post is a big one for me. It’s been thought about since November 6, 2014. I actually was supposed to write about it last month but I wasn’t ready emotionally to talk about it. I feel like if I write it out now that it will help me grasp the huge accomplishment that I conquered.   
I have always struggled with my weight since I was around 9 or 10 years old. Heaviest out of my siblings and always the heaviest out of my friends. I knew it deep down inside of me at a young age but it was something I never wanted to talk about. I didn’t want to face reality. There was a moment when I was 16 that I lost over 100 lbs but I wasn’t healthy about it and ended up struggling with anorexia.
During that season was where my parents and I first saw true signs of serious depression.  Thankfully I conquered anorexia but I ended up putting 90% of the weight back before I was 18. I was right back where I was before of being that heavy girl that had to mask everything. I was ashamed of myself, I couldn’t shop most of the stores my friends shopped at and if by a small chance I could shop there it would always be limited to a tiny corner of the store. I felt like people would judge me when I went out to eat. I couldn’t do anything physical, I blamed it on my knees but deep down the true reason I wasn’t going out was my fear of what my body would look. And I really didn’t want my picture being taken because that was my reminder of my reality. I even had my privative setting on Facebook not allowing people to add pictures of me before I ok’d them and I rarely did allow one to be posted. I was beyond ashamed of myself.   Because of that I started pushing back and declining on the invites to go shopping, eating or even just hanging out. I tried to do something about trust me.
From ages 18-25, I was trying to lose weight and live a healthy life but everything I tried fail. Every diet, you name it I probably have tried it or some version of it. I gave up really on my weight loss journey when I was diagnosed with Kabuki Syndrome in 2013. There were other things that I had to deal with and come to grips with and my weight was on one of them. I would end up eating my frustrations and worries about Kabuki Syndrome. I ended up putting another 15 pounds on my already heavy frame by the time my 1 year anniversary came around summer of 2014. I was miserable, uncomfortable and not happy with the girl I was looking at in the mirror. People would say you must be so proud of how far you have come and everything you’re doing for Kabuki Syndrome. I would smile and say thanks but deep down I wasn’t proud of myself.  There was still this girl that was staring at me in the mirror that I didn’t know. I still wasn’t quite ready to deal with reality.
 August, September and October 2014 I think were the months were I was the most hardest on myself. I really didn’t know how I let myself get as heavy as I did. I knew I needed drastic change. My breakthrough moment happened actually when I spoke at a Kabuki event and the subject came about of the touchy subject weight with Kabuki kids and adults. Sitting there in that room a thought came over me “Jordan, what are you doing? These families are looking at you for an example for their kids. You could be this even bigger example if you got your health in line and lost some weight”. That was the moment that forever changed me. There was no denying of reality in that room. I was overweight and currently not putting myself first health wise. I cried many, many tears the next few days trying to come up with the courage to ask for help. 10 days from the event and I still was trying to come with the courage to speak out for help and believe it or not my knee went out and I was couch redden for the a few days.
I was on the couch on able to move and my dad spoke up “Jordan, I want to talk about something that may come as a sensative subject but hear me out. Your mom and I are concerned about your weight” the tears started flowing right there. This was my shot, this is what I was asking for and praying for. I was scared, nervous, sad, happy, and just about every emotion in between that. Thoughts filled my mind what if this is just like everything else I tried?, Why  did I allow this to happen, How did this happen, So embarrassed that my parents had to come to me about my weight that I couldn’t even look them in the face when they  were talking to me. But there was a thought that overrode every single one of those thoughts, “I have to do this for those precious kids. They deserve someone. I deserve this. This is my chance to change and if I didn’t take it I’d be the fool”. That night November 6th changed everything in my life. That next morning I made the call into someplace I never thought I would personally call. I always heard and saw their commercials and even sometimes joked about their goofy testimonials but this day was different. I made the call into Jenny Craig Weight Loss. I went in with my mom and my sponsor where we drew up a plan of attack. She asked me why I came into Jenny Craig and I remember looking at her with tears in my eyes “For some pretty special kids that I know are looking up to me and for me. It’s time to start caring about myself”.
I started my weight loss journey saying I would write about it at 50 lbs weight loss. I hit 50 last month.  I celebrated with a special trip to Disneyland with my dad. Those who know me know about how special those trips to Disney with my dad. I was in denial about my weight loss. I didn’t know how to feel about my new body. It was beyond overwhelming. My Dad on the trip asked me why I hadn’t, written about my weight loss on here yet, it had been 50 lbs and I used share. I told him about my fears of opening up to you guys. What if once I share about my journey I start gaining everything back, What if 50 lbs isn’t a big enough accomplishment to share on here. My dad reassured me that 50 lbs was worth celebrating and talking about and that in time I would be ready to share with you all.
 It’ll be 6 months since I started my journey with my weight next week. Yesterday I stepped on the scale to see that I hit 60 lbs. I have lost 6 dresses and jeans sizes.  I am the smallest I have been in years.  It’s been a journey that has had its ups and downs. . I am learning to love myself for the girl that is inside of me and not what makes me on the outside. I still have a long way to fully accept myself but I am making those changes and taking it day by day. One day I’ll love the girl in the mirror just like everyone in my life already does.  In getting Jordan back, the girl that was always there but was hiding ashamed at who is was. During these last 6 months I have learned that the person I was looking for was always there. That I was something worth caring for, I stopped caring for years and let myself hide from reality. I have learned that beauty doesn’t matter what you weigh, what size you or anything. Beauty comes from the heart and that’s where you shine the brightest. It’s what makes the person who they are and not their outward appearance. I have had that said to me so many times over the years but never took it to heart till I started this journey. There are no truer words spoken.  And for the very first time in a long, long time I’m proud of myself for everything I have accomplished not only just my weight loss but everything that I have overcome and still fighting for. There are tears forming as I sit here at write this paragraph.
I want to thank you all for allowing me to pour out my heart to you guys once again. For listening to my heart and what I’m walking through in life. This is exactly what I wanted Kabuki Unfiltered to be. Some place to be open, honest and real with you guys. Something that I really struggled with before I started this blog. That we all have our own battles that we battle daily but it’s where we are completely honest with one another that we start winning the fight. We are broken and not perfect by any means. I guess that is why I love my Jesus. He sees us our brokenness, failures and weakness and still wants us. He doesn’t care what I am struggling with but just me as I am.  He is what makes me hopeful. In heaven is where I will be complete, pain free, worry free, depression and anxiety will be completely lifted. I can’t wait for the beautiful day but until that day I will be here on this earth fighting my battles until my Savior calls me home.  So in everything I do today I live my life to the fullest because who knows what tomorrow will bring.  Beautifully broken that’s what we are all.

Until next Time- Be Blessed,


Sunday, January 25, 2015

In The Work Field

Some of you have asked me to share what is like for me working the job I have and my work experience. What are some areas I excel in and what areas I have a more difficult time with.  I am so very blessed to have a position at the church my father pastors at for almost 5 years coming in April.
Let’s start 9 years ago when I got my very first job at Chuck E. Cheese. I worked the kid-check right when you first come in. I was in charge of stamping the numbers on everyone's hand and making sure all the numbers matched with the kids and their guardians before they left the building. I enjoyed filling in at the prize counter where the kids would turn in their tickets they won from the games they played. I also got dressed up as Chuckie (to those who don't know who Chuckie is; he is the mouse mascot) that appears at birthday parties and greets the kids when requested.  After a couple months of working there and I was not moving up in positions like I wanted. I started feeling a little like they were using me to do the jobs that no one else liked to do. I didn't know how to speak up for myself so, I just did them.
One day after a frustrating day working, I got off 30 mins early and walked over to the Target that was in the same parking lot and filled out a application. I had no idea they would interview me right then and there! I did the interview in my Chuck E. Cheese uniform which the interviewer got a good chuckle! I was hired on the spot and started the following week.
I did really well with working at Target where I worked as a cashier. I had a hard time with the timer that would show how fast you could ring up the person checking out. I would come up over the time limit. I never hit the goal that was presented to me weekly. I would get overwhelmed if people were in a hurry, most people that came through my line where understanding. I loved when it was slower and I got to take back all the returns in the store because I always remembered and knew where the item belonged. I loved organizing the displays in the make-up isles. That was my favorite part of the store and still is today.
One day during my shift I was asked if I could ring up the orders in the little Starbucks chain in the store for 15 minutes while one of the workers took their break. I learned of a open position that they had for a Batista in the little cafe and that day I ended up transferring over from my job as a cashier and taking position. I was quite happy over there. I had simple tasks and it was never really too busy. I stayed there until I left for bible college in the fall.
When I came home from bible college I applied at another Starbucks right by our house. It was perfect walking distance and it was my first job that I had where I could take myself to work and not ask for rides since I don't drive.  Working at this Starbucks was different experience than the one I worked at Target. This store was very fast paced. No matter what they had me doing I just couldn't keep up and I would get flustered. I was noticing my co-workers getting impatient when I wasn't understanding my training. The one thing I really enjoyed was organizing the shipments in the back. I loved refilling the cups,lids,etc...Although it was hard I stuck out my time there for a couple months until I left to go to Mexico for a couple months where I helped start a extension campus of the college I went to.
When I came home from Mexico I applied at another retail store. I really struggled with keeping up with everyone. I was taking too long ringing up people and I wasn't getting anyone to sign up for a in store credit card.  For the first time in my working career I realized something was different between myself and my co-workers so I than slipped into my fantasy world that I had at home where I was just like my family and not dealing with reality and brought it into workplace. I really struggled and ended up leaving my job. I realize now that it probably would have been a different story and would probably still be with the company if I had an advocate for me and helping me. I didn't know I had Kabuki Syndrome and that it effected my day to day life.
 Like I have said before in previous blog entries that church is one of the places that I never doubt that I wasn’t safe, that even though at times my anxiety takes over while I am there at church, I know that I am surrounded by those who truly love me and want to help me through whatever it is that I am struggle with.  So the fact that I get to work in environment that in my case makes feel comfortable and safe is beyond fantastic. The staff I work with is so supportive through everything I do.
I was at the church office when I got the call confirming that I indeed had Kabuki Syndrome and they have seen the whole story unfold and still is unfolding today. I really couldn’t think of more supportive work staff to work with. The church has been really supportive working with me when I have harder weeks than others.
I landed the job as the church receptionist during the start of a 3 year journey to see if I did indeed have Kabuki. When the retail job wasn't working out with that job that I had so I started helping out with the church and eventually was hired by the church. Some of you have asked if I have had help with SSI and disability. We have been battling for disability for help for myself for the last 6 years have kept getting denied.  We will continue to fight until we win the battle but as of right now I don’t have any help. So no haven’t been in extra classes to prep myself for the work force.
I have come a long way since when I first started working at the church. Some of areas that I really do well is greeting when someone comes in, I am one of the first faces that they see when they step into the office. Something I don’t realize but others do is that I am constantly smiling even when I get overwhelmed I’m always smiling. That’s part of the reason why people are so shocked to hear that I struggle with anxiety and depression almost daily because looking at me you wouldn’t never guess I did struggle with those issues.
I really like to clean the kitchen at home so I have taken on the duties of keeping the back kitchen/break room clean and tidy. I am really fast typer so I do really well transferring things into the computer. I remember names and people that come into the office really easily one of things that I can blame on my fabulous Kabuki memory works in my favor. My love for music even plays into a part of my position at the church. I get to have the opportunity to help pick out new worship songs and find musical guest to come play at the church. I am really comfortable with keeping the routine task the same. I get really easily overwhelmed when something is new or changed. Even if it’s the simplest thing that would make my job much easier; it’s really hard to make myself to relax and accept the new change. I may need the instructions repeated for the new project several more times than it would normally take to get the new task down. There have been many moments in tears just being overwhelmed. I  can get really nervous talking on the phone and making phone calls. I am afraid that people on the other end of the line won’t understand me or that my anxiety will kick in and I have trouble getting my words out. I am so fortunate to have several ladies in the front office that are near.  I can transfer the call to when I am having a hard time communicating. I always have issues with giving directions to places because I am not driving and I am not confident with the street names.
There are days that my anxiety is hitting me harder than other days. The office staff allows me to take a day off or the ability to go home earlier than planned. There is also times that one of my knees will go out and that will take me out of the office for at least a couple days. They understand on both accounts that it’s out of my control and have given me grace in that area.
All in all I really enjoy my job and the people I get to work with daily. That I also get to work with people that understand my condition, allow me the grace that is needed and love me for who I am.
Looking back at all my previous jobs it has shown me that if you want something go out and get it. Nothing is just handed to you; you have to go out there and earn it.
These job experiences have helped shape me for the job i have now.   I have learned that I really do well in a position that allows me to go at my own pace. I'm thankful for all the lessons I learned along the way and am still learning.
To those of you who have young Kabuki Kids: I hope my story in the working field gives you encouragement and gives you hope that your child can grow and experience the rewarding effects of having a job and that it is possible for someone with Kabuki Syndrome to have a job and be successful and thriving in it.

"I can do ALL things through Christ who gives me strength." Philippians 4:13

Before i sign off i wanted to let you all know about the opportunity to get a Kabuki Unfiltered shirt. They will be available till February 24 do it your today.:)

Until Next Time-Be Blessed!

Friday, December 12, 2014

Reflecting 2014

It’s been about a year since I wrote the blogpost about “Holidays living with Kabuki Syndrome”. Writing that post was the hardest thing for me to do. Admitting that I struggled badly with anxiety with the holidays and would rather be just sitting in my room then the feeling of being completely overwhelmed. Honestly part of the main reason I wrote it was so that my loved ones and close friends would understand why I retreated during this season.   The response I got after I wrote the entry from all the kabuki parents and loved ones saying that they felt like I was speaking for their own child was so overwhelming. That was the moment I knew that this blog was going to go special places.  That it would bring fresh insight to families searching for a glimpse into what their child’s future.
Holidays are still extremely hard for me. But writing this blog has helped me start overcome more, it’s held me accountable to the areas that I need to work on and it’s helped others who are around me understand that I am not shutting them out or not interested in what they are talking about. Now more than ever did I realize that my option and thoughts really did matter in conversations and large gatherings. That it didn’t matter if the word didn’t come out correctly that everyone basically knew the word I was going to say and I needed stop worrying what would come out. I have stayed silent for many, many conversations because of overpowering fear that I would word that I wanted to say would come out jumbled.
When I first wrote out the blog entry I can’t tell you how many of my friends and family members approached me telling me how it all made sense. That they had no idea what was going on but thought I just didn’t want to engage in the conversation. It allowed me to for the first time try and be involved last Christmas. It was honestly the most overwhelming experience when I first tried. The thing that kept me trying over and over again the past year was the emails that I got from this blog. I wanted to concur part of my fear for these kids so that they can know they can do the very same.  That to BE BRAVE I had to face the fears of what I was afraid of in the face. A simple step for some but such a big step for someone who struggles with anxiety.
I love that you all get to be a part of my journey through Kabuki Syndrome. That we can grow and learn together. So many things have happened this year through this blog. I got speak and share my story with others, I got hearing aids and discovered a world that I was missing, I got to meet Dr. Bjornsson not just once but twice this year and have the opportunity to talk with him and for him to say to me how much of an impact I was making in Kabuki Syndrome for stepping out and talking about it (that blew my mind to have him say that to me. It’s what keeps me going so many times when I feel like giving up), I got the opportunity to meet dozens of Kabuki families, I got to be interviewed for a magazine and invited to schools to talk about Kabuki Syndrome and the effects on bullying.  This girl who less than two years ago was so overcome with fear of what people would say or think of her, who was too afraid to talk in front of people, who didn’t think she could write yet alone who would want to read it after I wrote it, the very same girl who felt so alone and helpless to everyone, who even thought her life was not worth staying her on this earth. That in itself is proof that God can do the impossible in someone if you just are willing. If you are struggling this season don’t ever give up fighting. There is a God who loves you, cares for you, wants to fight for you and wants to carry you through this season.
Thank you to all those who have opened their lives to me while discovering this blog.  It has made my entire year hearing from each and every one of you.  Thank you for sharing my blog with those who you love. I have always said that if there is just one less person who said “What’s Kabuki Syndrome?” because of this blog than my job is fulfilled.  I love that I get to change the world with you guys and educate people on Kabuki Syndrome. But most of all I love that I found this beautiful Kabuki support group that has really become like second family to me. Each one of you all holds a special place in my heart and I thank God for each one of you all.  I look forward to moving forward in this journey with you!
For I am confident of this very thing, that He who began a good work in you will perfect it until the day of Christ Jesus.
Philippians 1:6

Have a very Merry Christmas and Happy New Year!

Until Next Time-Be Blessed!