Julie and Kyle’s son Kolter sometimes goes by the name Houdini, which is a nickname he earned during his many hospital stays and because of his successful escapes from the crib, his IVs, his diaper, his braces and more. “He’s even escaped the house to explore the world two times,” Julie said. Kolter also loves popsicles and cats, especially his cat, whose name is Popsicle.
Kolter was born with bi-lateral hearing loss, so he wears hearing aids daily and has cognitive and developmental delays. He had a g-button for more than half of his life, but they were recently able to remove it, and he had surgery to close the button site. And in 2015, he was diagnosed with muscular dystrophy.
“After the diagnosis, life stopped for me and was really confusing. I had no direction and felt that this was a sentence for a life of misery,” Julie said. “I was angry with the diagnosis. I was angry about the future. I was angry if there was even going to be a future. A diagnosis is crushing, and in my case, debilitating to the point of substance abuse. However, after lots of counseling and joining some Facebook groups, along with friend encouragement, I jumped in reluctantly. And I am so glad I did!”
There were several avenues that were given to us to join MDA (Muscular Dystrophy Association), Julie said, but she didn’t want any part of it, as she thought it was going to be a daily reminder that Kolter had Muscular Dystrophy. But in 2016, the family began working with MDA, and Julie said she is so thankful for this. “I have found my calling with MDA, and it has given me many opportunities to advocate. They are on our side with anything we need. I love calling our local office. Every time I call, they know my voice. That is something for sure!”
Supporting CHC-NE and MDA is important because doing so gives families a hope for their future, Julie said. “Without MDA, I feel that I would be totally lost. With MDA's support, I feel I now have purpose and direction in my life. My only regret is that I wish that we would have known about MDA sooner!”
Kolter recently started Kindergarten and he loves it. “He is excelling well, and I look back and wonder why I ever questioned sending him to Kindergarten in the first place!” Julie said. Kolter is non-verbal, so all of his teachers sign to him, along with his classmates, and Kolter also has a para-educator.
“We use spoken language along with Signing Exact English (SEE) to talk. We started signing when he was a baby, but I was in denial and so convinced that he would talk that I fired our deaf educator, who was coming weekly to help us learn sign,” Julie said. “About a year later, I re-hired her. It was the best thing we ever did, and now I don't know what we would do without her.”
Kyle is a self-employed mechanic, and Kolter enjoys going to Dad's shop and helping him. “He really loves the car hoist,” Julie said. Kyle is also a fireman, and Julie has several part-time gigs that include filling in at a local gas station, working a local flower shop and working with the Niobrara Council. But, a majority of her time is spent working the ambulance as a volunteer EMT for 911 calls and doing transfers to higher-care facilities. Julie also finds time to advocate, raise awareness and fundraise for several things: the deaf/hard of hearing community, sign language and MDA, to name a few.
“I would be lying if I said it didn't sneak back into my thought process that we got a crappy hand dealt to us, but more often than not, now, my thoughts are filled with so much happiness that we've been given our boy, and we were chosen to not only be his advocates but also advocates for the many other children who deal with MD as well as other disabilities,” Julie said. “We are not solely an MD family; we have many hurdles we've had to overcome. I know our journey is not over, and the hurdles will keep coming. But we will keep jumping. We have the tools, MDA and wonderful family and friends, near and far, who help us to find the joy in MD rather than the disappointment!”
Muscular Dystrophy really can be a wonderful thing, Julie said. “For newly diagnosed families, they will not comprehend what I am saying, but someday, they will look back and understand and will be saying this to the next newly diagnosed family. I am telling you that through this process, you will learn how AMAZING your child really is and how much support is really out there. We've all been there, and thankfully I am now in a place with our MD journey that I can embrace what we've been given rather than being so angry.”
Julie loves to be a support to newly diagnosed families and can be reached at 402-322-1566 or via Facebook as Julie Sisson Mizner or Kolters Krew. She also blogs here.