Friday, September 8, 2017

Dear Scarlett

Dear Scarlett,

Your Dad and I were trying to think of the best way to go about this and figured writing you a letter would be an excellent way to write down what’s going on inside our minds. Perhaps one day even, when you’re old enough, you’ll read it and I pray that day you’ll feel the love that was poured into this letter.

Yesterday your mama got a phone call that would forever change our lives. The lady on the phone called to say “Your daughter has Kabuki Syndrome”. You see in the hospital when you were just a few days old they drew your blood to be tested in several different labs across the United States. We had to wait almost an entire month before we got the answer back from those tests. Your mom and dad knew that there was about 50/50 chance you could have this special syndrome, but didn’t want to take our minds there until we really knew.  It’s a phone call that no parent wants to hear, their precious little baby has something different about them, something that they can’t fix.

You may wonder what this thing called Kabuki Syndrome is and how you ended up with it…The best way to explain this is starting from the very beginning. We like to explain Kabuki Syndrome as a syndrome that affects each person with it differently. Some may struggle with walking and talking, some may suffer with heart problems or kidney, some may even struggle with high anxiety. The list of things that comes along with Kabuki Syndrome can go on and on. Not many people have heard about this syndrome, in fact not many doctors have even heard of this syndrome. How crazy is that??? Kabuki Syndrome is a syndrome caused by mutation of a gene. There are two genes that can be affected by this and you have the gene KMT2D (formally known as the MLL2 gene). Scarlett, you may or may not know this, but you know someone with the same mutation gene. Your mom has the same gene as you. We don’t know yet the extent of the mutation, but no matter what you will always be loved and supported, just like your mom! She joked with your dad last night that since you look like your dad so much that it was only fitting that she gave you something to tie you and her together...😉

What does your future look like with Kabuki Syndrome? Well we really don’t have an answer for that. We know you have the finger pads, long lashes and trouble gaining weight (it took you a whole month to get back to birth weight but we finally made it back) all of which are typical for Kabuki Syndrome. Your mom and dad have a big meeting with the doctor and genetics team next week to discuss more in detail about what we need to be on the lookout for. We’ll have to do a bunch of test to rule out heart, kidney a few other possible problems again. The doctors did multiple ultrasounds of your heart, kidneys, and other organs when you were still inside your mommy’s tummy, but now that you are here they want to take a closer look. So far you are a healthy baby and we can’t stop thanking God for our beautiful baby girl!

Now that we got the tough news out of the way there is one thing that we want you to know and that is Kabuki Syndrome will never define you. You can achieve anything you put your mind too, just look at your mom! She always dreamed of getting married one day and having a family of her own. You are in every way her dream come true! She is living proof that with enough hard work and prayer you can achieve anything you put your mind and heart into! All of that to say don’t ever think that because you have Kabuki that you can’t achieve something. It may take you a little bit longer than some kids your age, but that never stopped your mom or your Auntie Bells! We’ll be your #1 cheerleaders in this life and we’ll always have your back no matter what.  

We wish that we could magically take this away from you, that we could protect you from all hardships throughout life but we know that we can’t and that’s heartbreaking. But we want you to know you are loved beyond what words can express. You are Scarlett Belle Brownell, you are our daughter first and foremost and there is nothing we would change about you, our sweet baby girl. God created you with a plan and a purpose. God makes no mistakes, You Scarlett were not a mistake. God placed you in a family that would be perfect for you because He knew your parents have such a heart for the Kabuki community and that we would be able to love and nurture you through the good and bad. Having Kabuki Syndrome is not a bad thing by any means. If you only knew the community of people that we have connected with because of your mom’s diagnoses that already loves you. There is so much support and love out there with Kabuki Syndrome families it’s like we’re a part of one big large family. How cool is it that you have hundreds of friends that are just like you! We like to call them your Kabuki sister/brother. They are some of the nicest people We’ve ever meet and We can’t wait to introduce you to them!

Welcome to the Kabuki Syndrome family Scarlett. Always remember we’re so proud of you and the woman you’re going to become. Go change the world Scarlett. We love you so very much!

All our love.

Dad and Mom 

Sunday, January 22, 2017

One Little Miracle

Never in my wildest dreams did I ever think I would be writing this blog post. Life has been insanely busy and ever changing. Major life events have happened to our household that has forever changed us. First and most exciting I got married to my sweet husband, Zackariah, at the end of last year. We had a beautiful wedding in my hometown with our friends and loved ones. There even a few kabuki families that made the trip out to the wedding. It was truly an event that will go down in the books. There was so much support and love poured out on Zack and I, our kabuki family was a major part of that. I can’t begin to thank you for all the kind words that everyone shared with us. We truly are so grateful for you all!

As I dream has come true of becoming a wife, another one is just beginning. Just four weeks after we were married we found out that we are expecting a baby. All sorts of emotion ran through my head the second I saw pregnant on that test. Were we actually ready for this? Was this really happening, all my dreams were coming true, I was really going to be a mom. Could I really handle being a mom? All the normal freak out questions that every mom goes through. But there was one question that rang in my head over and over again, What if I pass on Kabuki to this child?---Would I blame myself forever for this? Before Zackariah and I were married there were many, many talks about our future and the future of what could possibly be our family. We knew the odds of us having a Kabuki child would be 50/50.  I remember sitting on a couch after we had just found out discussing the very probability of the child having Kabuki and being so scared, my sweet husband reassuring me with the same simple answer he has given me since we started having these discussions “Jordan, it doesn’t matter if the baby has kabuki or not. If it does I’m not worried, I see how you are when you talk about these kids that have kabuki syndrome, and I saw how you were with Isabella Marty when she was here for our wedding. You’re gonna be an excellent mom to that child whether it has kabuki or not. The baby is gonna be so ridiculously loved either way”. Zackariah and I both believe that God is author of life and that He has plans for this baby before we even knew there was a baby. We couldn’t be more thankful to Him for giving us this blessing.

So, there you have it guys the “miracle babies” are having their very own miracle baby. Many of you know the miracle that happened when my mom started to miscarry me and the Lord stopped the bleeding, but what you don’t know is that my husband wasn’t supposed to be born as well. Zackariah’s mom had just finished chemotherapy treatment and the doctors said she could never have children. When she went in to see if there was any possible ways of becoming pregnant, she found out she was pregnant with Zackariah.  When Zackariah and I were first getting to know each other and found out we both were “miracle babies” we knew that it was clearly not just coincidence but God making our story even stronger. Because of that fact of our births being so special, Zackariah and I wondered if we would have a hard time having our own children or even if we would even have children. Well, we found out our answer pretty quickly. Haha!  We believe that God has a wonderful story for our little one and we can’t wait to wait it unfold before our eyes.

After the shock wore off we began getting so excited about the baby. We were very careful not to get too excited because it is still early on and anything could still happen. As time passed and each week passed I was one step closer to finishing the first trimester (by the time I post this I will be entering week 10) the more excited and giddy we became. Our families and the very small select close friends we have chosen to tell are beside themselves happy with the news of a new member joining. We are so blessed to have such support group around us. 

I’ve been pretty sick with this little one; morning sickness is more like all day sickness. But I’m reminded every time I’m sick that this is a good thing, which means the baby is growing and this sickness shall pass. For those of you that are local and have seen me recently here is the reason of me being so exhausted and pale. Zackariah has been an absolute blessing to me these past weeks caring for me with such care and understanding. He never turns down a request I ask of him and he does it with a happy heart, never once complaining. We have found an excellent doctor who we really love that specializes in genetics and is working alongside the genetics team that officially diagnosed me with Kabuki Syndrome almost 4 years ago. We really feel like we are in GREAT hands with them. We’ve had the opportunity to see our baby twice already and are amazed at how much the little one has grown. Doctor is really happy with the growth and the strong heartbeat. Baby is making mom and dad proud already with those reports.  

I couldn’t think of a better way to announce our little one than on here. You all have read my hopes and fears. You have watched dreams of mine come true and now another one is being fulfilled. I am finally a Mommy to a little one. Pray for Zackariah and I as we begin this new journey of parenthood. As much as we are excited and thrilled there is still a bunch of unknowns and that is scary. Please pray for myself and the baby growing inside of me, that this pregnancy would be healthy and that in the end we have a healthy baby come August. We know that whatever happens we will continue to put our eyes upon Jesus, we have put our little one in His hands since the very beginning and trust that whatever happens we know God is good and He is God.

This sweet little one has captured our hearts in the most unexpected ways. And we know that he or she is already deeply loved by so many!

Until Next Time- Be Blessed! 

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, 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! 

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,