“Most people have 23 pairs of chromosomes in most or all of their cells for a total of 46 chromosomes in all. These chromosomes include DNA and other material that provide a blueprint for “building” a person. Some people have trisomy conditions—those related to having an extra chromosome in most or all of their cells, for a total of 47 chromosomes in all. An extra chromosome can cause a variety of health problems ranging from mild intellectual and developmental disability (IDD), to severe physical problems.”This is long but this is from one of Kala’s reps and also a mother to a trisomy warrior:
“Take a Bow It’s amazing how transparent at times one can feel having a child with a rare chromosomal condition. You get good at repeating yourself, researching EVERYTHING, and most of all survival. You get to a point that you are in this fog, delirium if you will. You feel you’ve worn out the little resources you do have, you despise asking for help from friends because the same amazing people step up and you desperately don’t want them to get tired of you, and there is no weekend, no vacation, no time around the clock, literally. And then there’s the guilt. The guilt that comes because you do still have the presence of your child and you are so thankful, but still exhausted. There’s the guilt that you want, no NEED a break, emotionally, physically, spiritually….And in the small chance you get that time what would you do? Would you spend that time with their sibling who has been second fiddle, with your spouse, alone? No matter how you do it, something, someone still ends up neglected. And, you feel guilty for feeling all of these feelings. Once you get past the fog and the guilt you hit a stage of recognition. Your acknowledge something has to be done, something different, something better. You become your child’s best advocate. You learn all the ins and outs of care. You learn how to work toward better support from your state, whatever that may look like. You dream to educate and advocate on larger levels. And then some of us, just when we don’t think we can handle one single more thing; we dive in. You start navigating, driving and turning, pivoting when necessary. You drive down so MANY dead end roads. You make so many U turns. There are far too many stop signs and stop lights. And then, almost out of nowhere this magical green light appears. It’s a small town, but it’s a beginning of a stretch into an open road. Someone that you least expect, listens, they care, they step into action. This is where Kala came in. Her Bowdacious Babes Bowtique accepted Journey with open arms. They got to know her ability to translate love by her contagious expressions. She saw a way to accept and break barriers. She gave my child a chance. She gave us a sense of normal back. A bow rep, so what, right? Well, for my family it meant that my child was given an equal opportunity to do what my oldest daughter was selected to do because of her Shirley Temple looks. Don’t get me wrong, I find my little Journey equally as adorable but she can’t do the traditional things other children her age can; like sit with ease, stand, walk…. But then Kala did something more. She cared to ask questions. If I could only tell you what a beautiful thing that is. When you feel like you are standing on an island in the middle of the ocean and then someone finally says, how did you get there? The hope that someone really cares; the feeling is invigorating. She found a way to help in multiple ways. She found a way to become a part of Trisomy Awareness for March and became a collective part to spread awareness for all Trisomies not just my daughter’s Trisomy 13. She created bows specific for the cause, promoted it on her page, allowed for me to share, and then if that wasn’t already more than one would expect, is taking a portion of the proceeds and donating it to SOFT,( Support Organization for Families with Trisomy). All I can say is don’t underestimate a small town, a small business, a small odds because put all of those together and you make a BIG difference. You’ve got a little girl, now 2 who wasn’t supposed to live past 7 days, a tiny town in Utah that most of the country has probably never heard of, and a business that hasn’t even been around 3 years, but the cause has literally exploded, nationally. This genuine spread of love and kindness in a world full of confusion and chaos is needed. Donations are coming in to purchase bows for kids that represent their particular Trisomy or an expression, “ Full Code,” that to a parent of a chromosomally abnormal child means, “ life,” literally. Where others may be afforded the common right of life, it’s something that may not be acknowledged for our children if we can not be their voice. What started as being inclusive and a few pretty bows to make some smiles has turned into a national effort to educate, a mission, a journey if you will, a Journey of Love. and for this, Kala Bruhns, owner of Bowdacious Babes Bowtique, should take a bow.”
Additional Resources
https://bowdaciousbabesbowtique.com/
This is an Cedar Valley Sentinel (formerly i84005) Resident Spotlight. If you know a resident that you would like for us to spotlight, please let us know. You can view other resident spotlights on our Resident Spotlights page.
Mike Kieffer is an IT geek by hobby and trade, with a BS in Information Systems & Technology. He is a proud father of 10, a grandpa, an author, a journalist, and internet publisher. His motto is to “Elevate, Inspire and Inform”, and he is politically conservative and a Christian. Mike has a passion for technology, writing, and helping others. With a wealth of experience, he is committed to sharing his knowledge with others to help them reach their full potential. He is known for his jackassery or his form of self-expression that encourages boldness, creativity, and risk-taking. It can be a way to push the boundaries and challenge traditional norms, leading to creative solutions and positive change.