By Jordan Applegate
Mommy to Kaiden
Epilepsy, cerebral palsy, autism, verbal appraxia, knocked knee syndrome
born December 2013
My journey with Kaiden began before he was even born. I had a difficult pregnancy with mild preeclampsia, and when I went into labor, his heart rate dropped every time I had a contraction. He was delivered by emergency C-section in December 2013 and spent his first month in the NICU at Cox South.
When Kaiden was just six days old, a nurse witnessed him having a seizure that caused a stroke. That was when we first learned he had epilepsy, and our journey with his medical challenges began.
When I first heard his diagnosis, I thought it was the end of the world. My heart shattered. I kept asking myself why my baby had to go through this. All I wanted was for my son to be cured and to have a normal, healthy life. My biggest fear was losing him.
As Kaiden grew, we learned that epilepsy wasn’t the only challenge he would face. He was also diagnosed with cerebral palsy, autism, verbal apraxia and knocked knee syndrome. His medical needs became increasingly complex, and for several years, we worked with a neurologist through CoxHealth. Eventually, his doctor told me he could no longer treat Kaiden because his needs were too complicated.
At first, I was irate about having to travel to Kansas City for his care. But looking back, being referred to Children’s Mercy was one of the best things that could have happened for Kaiden. We finally began getting better control of his seizures through medication and a vagus nerve stimulator (VNS).
Over the years, Kaiden has spent so much time in hospitals for EEGs, MRIs, PET scans and observation. There have been countless appointments and trips to Kansas City, and it hasn’t been easy. I’m a single mom, and I’ve lost multiple jobs because of hospital stays and the time I’ve needed to take off to travel for his medical care. I’ve also lost friendships because I can’t always just go out and spend time with people.
Thankfully, I’ve had my mother and sister beside me throughout this journey. Whether they were giving me a much-needed break or simply letting me cry, they’ve been there for both of us. Everything we’ve experienced has brought our family closer and made our faith stronger.
We first connected with On Angels’ Wings around 2021, when a friend from church told me about the organization. We absolutely loved our first photography session. The pictures were beautiful, but what meant the most to me was seeing Kaiden smile throughout the entire experience.
Things became especially frightening in 2022, when Kaiden was classified as critical care. I was told that even a small seizure could be the end of his life, and that I needed to begin planning for his end-of-life care. As a parent, hearing those words was devastating. I was angry at the world. My mother and I sat down together and made the arrangements no parent ever wants to think about.
During that time, Kaiden was also granted a wish through Make-A-Wish. Later in 2022, he underwent surgery to replace the battery in his vagus nerve stimulator, and thankfully, his condition began improving.
We were told the new battery should last five to seven years, but it lasted only about two. Now we’re facing another replacement surgery, and Kaiden has once again been classified as critical care while we wait. It’s a frightening place to be, but we’re leaning on God and each other. We pray that his next battery will do what it needs to do, and we know everything is in God’s hands.
Kaiden’s diagnoses affect more than just his physical health. He struggles with making friends and feeling accepted. He understands that he’s on a different educational level than some of his peers, and there are sports and activities he can’t participate in because of his conditions. As his mom, it’s hard watching him face those challenges on top of everything else.
But through it all, Kaiden has the most amazing smile. No matter what he’s going through, he finds a reason to smile, and it’s contagious. If he can smile through everything he’s endured, then we can find the strength to keep going, too. That’s why we say #KaidenStrong.
I used to wonder why my son had to face so much. Now I believe there’s a reason behind everything we’ve experienced. I feel that part of our purpose is to be there for other families going through similar journeys, and I hope Kaiden will someday be able to help others by sharing his own perspective.
My biggest hope is still that one day Kaiden will be seizure-free. I want him to have the opportunity to live his life without the constant fear of another seizure, and I want us to continue helping other families find strength and hope along the way.
We’re grateful to On Angels’ Wings. It can be difficult to find photographers who are comfortable working with children with special needs, so having someone who could capture those moments for us meant everything. Family pictures aren’t something everyone can afford, either, especially when you’re already dealing with the financial challenges that come with caring for a medically complex child.
But OAW has given us so much more than pictures. The ongoing support has been amazing, and everyone has become like family to us. Not every family has people at home they can lean on, and that’s why the support OAW provides is so important. Having people who understand, who care, and who are there when you need them makes a difference.
Our journey has been crazy, and it certainly hasn’t been what I imagined when Kaiden was born. But I love my tour guide. He’s pretty amazing, and I wouldn’t trade him for anything.
