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Hey there! I apologize it has taken me so long to write. Life has been crazy finding my place with a newborn, in October our town was engulfed in flames, dealing with Scarlett’s breathing problems and just when we thought we were closing the door on “fires” our apartment furnace caught fire causing us to be emergency transferred to another unit just two days before we left for Christmas vacation (thankfully our possessions were spared in both fires). All that to say we have seen God’s hand truly be upon our little family the past five months.
I can’t say thank you enough for the response of love and support after my last post where Zack and I told you guys that our precious Scarlett Belle indeed has Kabuki Syndrome, just like myself. At the time I wrote the letter to Scarlett, she was only a month old, and we hadn’t even met with the genetics team in the city. We really didn’t know what the future would hold for our girl. At that point every test and exam came back as completely normal. If I am being honest it really took me a while after writing “Dear Scarlett” to be ok with her diagnoses. I kept blaming myself for giving her this syndrome. As I said in my letter to her I wanted to spare my sweet baby. I would ponder what the specialist/doctors were thinking meeting us knowing not only did my daughter have Kabuki Syndrome, but I had it myself. There were several dark months that I struggled with her diagnoses. My precious husband has walked me through this season always telling me what a special gift we have in Scarlett and that as long as she is happy and healthy what more could we ask for.
Now, for the update on our Scarly girl. I’ve had many messages recently asking about how she is doing. If you follow myself and my husband on social media, you know that we have been dealing with her being in and out of the hospital. When Scarlett was a month and half she started what we have been calling her breathing episodes. She’ll be completely fine and then all of a sudden, she goes completely limp, white as a ghost and will not breath for upwards of a minute. It’s been completely horrifying to say the least. At this point she has had a total of six episodes (that we know of), two hospital stays, 2 EEgs, 2 Echos, a MRI, an ambulance ride and more that I am not even remembering. All testing at this point has not caught anything. At this point the doctors are thinking they are seizures, we do have a longer EEG that will be done in the city to try and see if we can capture an event or see if there may be tendencies in her brain for seizures. We are very blessed to be borrowing an angel care monitor system, from Zackariah’s cousins, that has been able to give us some peace at night. Other than the breathing episodes and some minor things, she’s a very happy baby. She loves to smile, recently has found her voice and her giggle. She is a daddy’s girl through and through. Loves all things Disney which makes mama’s heart soooo unbelievably happy. :) Zackariah and I really couldn’t ask for a sweeter baby girl!
As you can see you are reading this entry on an entirely new blog. After much discussion Zackariah and I have decided to start a new blog. Kabuki Unfiltered has such a special place in my heart, it was there where I introduce my story to you guys. It was there where I found my voice and it was there I found out I was never going to walk alone in this journey with Kabuki Syndrome. Now that I have found love, gotten married and had a baby I felt that along with that comes a new chapter. Kabuki Family is a combined website that will feature my blog entries (and I am told you may even see a couple entries from my husband), my husband’s gluten free recipes, a special blog series called “Dear Scarlett” for letters for Scarlett as we navigate her journey with Kabuki and maybe some pictures and videos. But don’t worry you will still be able to read most of the past blog entries that were on Kabuki Unfiltered. They will be posted here on this site. With this new site I would love to hear what you guys would like to hear about (more blog posts, videos, recipes, etc give us your ideas!).
We are excited for this new season/chapter in our life’s. We have exciting, big things on the horizon that we can’t wait to share with you guys. In fact, we are going to tell you one of biggest things right now.
The Brownell’s are moving to Washington next month! Yes, you read that right we are packing up once again and moving but this time it won’t be across our complex. We mentioned earlier how we are were visiting Zackariah’s family during Christmas. An opportunity arose while we were there for Zackariah to apply for a job back in the airlines. Many of you know that when Zackariah and I meet he was working for the airlines and that’s how we made the long-distance relationship work surprisingly well. Due to a car accident Zackariah had to leave his position at the airlines just months before our wedding. We really didn’t know how God was going to provided but we trusted Him. God opened a door for him to take the media director at our church. Over the next year and half Zackariah realized how much he missed working for the airlines and the ability to travel as much as he used too. When we learned about the position becoming available at Zackariah’s old airport and how it would work with his back, we decided it was too good not to take the opportunity to pray about it. Every move we made in the process seemed like an open door. Zackariah was offered the job this week and he accepted it. Scarlett and I are so proud of our #1 guy, these past few weeks have been crazy, not knowing if he would actually get the job. He has worked so incredibly hard and to be given an opportunity to go back to what he loves doing is so wonderful to see. We are so thrilled for this new season for our little family. With that being said it is bittersweet to be leaving Sonoma County. I spent the last 20 years here. While it has been my dream to move from here, it is also sad to leave a place that holds so many beautiful memories. My family still lives here, and we’ll be visiting often. Sonoma County friends, please come visit us in Washington!
As I am sitting here wrapping up this blog I can only laugh. I totally didn’t intend for this entry to be a life update, but this way has seemed to be the easiest way to update you all about everything especially with our latest adventure coming up so quickly. I promise the other entries will be much more mellow for The Brownell’s (at least that is our prayer!). Thank you for walking along side us the last few months wither it be in person or virtually. We love you guys and are so thankful for each and every one of you all!
All my love,
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
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!