All three of my kids have mitochondrial disease, which is a sibling-based, incurable disease. From what I’ve been told, doctors haven’t seen a child with this disease make it to adulthood. It’s difficult when people say to "keep them as comfortable as possible", but to give up on a six and seven year-old is difficult. They didn’t think Baylee would make it to five, and she had her sixth birthday last month and there are still milestones that we’re still meeting with all the kids.
James is my 7-year-old, and he has attention-deficit/hyperactivity disorder (ADHD) and sensory processing disorder. Landon, he’s age six, he has ADHD and oppositional defiant disorder. He also has rectal issues where he has prolapses, part of his large intestine slips outside his rectum.
Baylee has epilepsy, a feeding tube because of swallowing issues and chronic pneumonia. If she gets exhausted or too hot or cold, she has seizures. She started having seizures at three-days-old. Surgeries are high risk for her. She actually died on the operating table during her first big surgery. They told me for a full hour that she was gone at only eight months old.
Right before Baylee’s feeding tube surgery was when I realized I wanted to be a nurse. Since I would have to place a feeding tube into my daughter’s stomach at home, the nurses said they normally have dolls I could practice on, but they didn’t have any so I had to practice on my own child.
I would have to place a feeding tube down my daughter’s nose and into her stomach and check the placement while she was awake and crying at eight-months-old. I didn’t want to do it, I didn’t want to hurt her. I did everything they told me to do, and I got it in the first try. The nurses said, “You are really good at this, you could be a nurse.”
I realized that as a parent, I have a sixth sense, a mother’s gut feeling, and I want to be there for my kids as much as possible. The only way to do that is to get my nursing degree.
One of the things that sticks out the most would probably be the picking and choosing. No parent wants to pick one kid over the other, but in the end I had to. It was either go to the hospital in Kansas City with Baylee or stay at home with the boys, and in the end there was nobody else to go with Bay. Even though the boys were with friends and family, I am sure in their little eyes I abandoned them.
Growing up, I could not trust my mom or my dad. I grew up with abuse and neglect, but I’m very adamant that abuse doesn’t define who you are. Even if you come from a bad background, it doesn’t define who you are. It is a really big fear of mine that my kids might feel the same way about me, that I wasn’t there for them enough and I didn’t protect them enough. I try to be there for them as much as I can and be their voice, because no one was my voice.
Thankfully my mom has done a complete 360 from the person she was and is now a good grandmother. Also, throughout all of this, there have been so many amazing organizations that have been there to help my family. There’s no way that being a single parent of three kids with so many medical needs and trying to go to school full time that I would have been able to provide enough for my kids, especially around the holidays.
Help Give Hope has helped us tremendously. I would not have been able to get my vehicle and take my kids to doctors’ appointments in Kansas City and St. Louis. They’ve helped us with gas. They’ve also helped us with Christmas.
Ozarks Food Harvest helped out last year through a special grant. My kids would not have had coats or the underwear that they needed if it wasn’t for them. I go to Crosslines to get some of the necessities that we might need, because there are times when I can only afford to get cheap stuff. There are times when we go weeks with just peanut butter sandwiches and ramen. I make sure that there’s enough for the kids, but there are days where I don’t eat because the kids are more important.
I know what it feels like to go hungry from the abuse from my parents and I don’t want that for them. I don’t want them to go to sleep hungry, I don’t want them to wake up starving and feeling like your stomach is eating the inside of your belly, which is what I felt growing up.
It sucks being the parent who can’t provide for children, but it’s a blessing whenever there are organizations out there that will help you be a good parent.
I can’t work right now because of the intensive care my kids need and because I go to school full-time. I am trying to get my education so I can make a better life for them.
I’ve learned so much through these challenges my family has faced. One thing is not to pity people for their disabilities. My daughter, yes, she has disabilities, but she has changed me in so many ways. She has made me have the drive to become a nurse. She has shown me the true meaning of strength. She is only five, and she’s conquered death. She conquered the doctors’ diagnoses.
Don’t define someone by their disabilities, it’s what’s on the inside. And also, don’t give up. That’s a big one. It would be such a shame for the world to miss out on knowing someone as special as my Baylee, and my beautiful boys.
Story by Christine Temple, Communication Coordinator, Ozarks Food Harvest
Would you like to help? Learn more at ozarksfoodharvest.org.
Tabetha and her children receive food assistance every month from the Ozarks Food Harvest. The only food bank in southwest Missouri, Ozarks Food Harvest provides food to more than 200 hunger-relief organizations across 28 Ozarks counties. It serves more than 260,000 individuals and distributes more than 14 million meals, annually. Ozarks Food Harvest believes that together, we can Transform Hunger into Hope.