This month’s “Light in The Tunnel” feature goes to Jenny, the mother of Neeley. Jenny has been a constant support to Neeley as she has dealt with severe Postural Orthostatic Tachycardia Syndrome. Read on to hear their story in Neeley’s words.
The Fight For A Diagnosis
My mom is definitely my light in the tunnel. This is our journey. I say it is our journey because my mom has been with me every step of the way.
I was your average 13-year-old: I hung out with friends almost every day and ran on the track team. On February 15, 2017, having ran just the day before, I woke up with extreme fatigue, vertigo, and migraines. As we thought I had just come down with a flu bug, we decided to wait things out. But, After we realized my health was not improving, we started going to doctors. My mom was there for me as I got tested for everything you could imagine, but the tests kept coming back negative. We wanted more than anything to know what was going on. One day, a doctor suggested that Postural Orthostatic Tachycardia Syndrome (POTS for short) could be the culprit, and the doctor sent me to a cardiologist to be diagnosed.
Unfortunately, the cardiologist brushed us off, saying I was completely fine and that my symptoms must be all in my head. Still, my mom fought for me. She could’ve easily agreed with the cardiologist, but instead she kept searching for a diagnosis. She spent days researching what could be wrong. She drove me 2 hours away to find a doctor who was knowledgeable about POTS. After months of being sick, X-rays, MRI’s, many blood tests and visiting about 7 different doctors, I was finally diagnosed with POTS.
POTS is an illness which affects your autonomic nervous system. Your autonomic nervous system controls everything from your temperature to your breathing to your digestion. The problem is that when I stand up, all the blood pools to my feet. Because of the lack of blood in my head and upper body when I stand, I become dizzy and can even pass out. It was amazing to know what was wrong but we had a long road ahead of us. Since receiving the diagnosis, my mom has spent countless hours searching for different methods that could help me manage this illness.
As time went on, more and more symptoms started showing up like nausea, making it extremely painful for me to eat. I couldn’t stand for more than 2-3 minutes at a time. I had constant headaches that often turned into migraines. I was always so tired and no amount of sleep could change that. These are only a few of many symptoms I battle on a daily basis. Things that were once easy for me became mountains. I struggled to do things even as simple as showering or brushing my teeth. My mom became my personal caretaker. In the mornings, she helps me to get ready for school by doing my hair or handing me the things I need. At night when I am completely out of energy and when even brushing my teeth is a struggle, she does everything she can to help me.
A Worsening Situation
Because my illness is invisible, I look like a healthy teenager. For this reason, many people have thought that I was faking my illness. My mom has stood up for me countless times in those situations. She is my advocate.
School has been a huge struggle for me as well. I suffer from extreme brain fog which makes retaining information hard and taking tests even harder. My mom fought the school for the accommodations I deserved. She made sure the school would provide me with everything I needed. Anytime we are out in public, she makes sure that I can sit down as often as needed, even if that means our outing takes an hour longer than usual. My mom drives me hours away to doctors appointments multiple times a month. I know for a fact that she will never stop searching for a cure.
One day about a month ago, I was way more dizzy than usual. I became so dizzy that I blacked out and fainted after only a few seconds of standing up. Not only that, but the dizziness makes watching movies or reading anything impossible. Also, I now have constant migraines at least once a day. Though we hope to find a way out of it, I am currently in a wheelchair at all times. She now has to do a million more things for me. My mom never once has complained. My mom even carries me upstairs on her back daily. Since I cannot read, she will read or write texts or other things for me. She even helps me by typing out long school essays for me as I dictate to her what to put. When watching a movie, she will tell me exactly what is going on the entirety of the movie. She will always make sure I have someone to push me around everywhere I go since I don’t have the strength to push myself.
My Mom- A Constant Support Through Every Challenge
Through this long journey, my mom has been there every step of the way. I know she will continue to be there no matter what. She is one of my very best friends. She is my caretaker. She is my motivation. She helps me to keep hope. She has helped me to find growth and positivity through my illness. One of the biggest lessons she has taught me is that a failure in our plan is a success in God’s. She is the most selfless person you will ever meet. Even on days like her birthday, she always looks for ways to help others. She is the type of person who makes you feel like you are the most important person in the world. Many who suffer from a chronic illness say that their parents undermine their illness or make them feel like a burden. However, my mom has never once made me feel like a burden. I feel as if she lives my illness with me because that is how supportive she is.
My Mom has helped me to start a nonprofit, Neeley’s Chronic Joy Foundation, to help other kids who suffer from chronic illness. She supports me 100% in it and spends so much time helping me figure everything out. She supports me and all my siblings in all our dreams. Though my childhood is different from many, my mom has helped me to still have an amazing childhood.
Besides these many things, she is an amazing mom to my 3 younger siblings. She would do anything for any of her kids. She is the mom who all of our friends call mom. Many of our friends consider her their second mom because of all she does for them. She’s the fun mom. On top of all this, my mom also runs two successful businesses. She truly is a real-life hero. My mom is the most amazing mom you could ever ask for. Without my mom, I wouldn’t be who I am today. I probably wouldn’t even be here. Words cannot even describe her sacrifices to me and so many others. Though I could never repay her, I cannot wait to help her feel a glimpse of how much she is appreciated. She is the most deserving person I know! Thank you for being my light in the tunnel mom! But like you always say, there is a rainbow at the end of this tunnel. I love you!!
I would also like to say how thankful I am for what all of my family does for me. They are all such a big light in my life and are all my biggest rock. My little siblings are my inspiration. My dad is one of my biggest heroes in this journey too. He is so loving and supportive. He will do anything to help me battle this illness. I love all of you!