Written by: Taylor Trotter

I am exhausted. Mentally, physically, emotionally.

Being a medical mama is not for the faint of heart. Once your child is diagnosed with a chronic illness, nothing will ever be the same. Your thoughts cease to be your own, but instead become a combination of gut instincts, fighting the next medical battle, constantly advocating for your child, worrying if this or that will cause a flare-up, wondering if these current medications will work, wishing your child could be pain-free, and that you could carry the burden of pain for them. It literally never stops. You become a new you. Your life revolves around the medical field—appointments, insurance battles, therapies, testing, medications, figuring out how to research and where to research. Not only did my daughter’s diagnosis change her, but I’m not the same me I was before she was diagnosed…and then again, a year later when we took on a new diagnosis. Managing the care is a full-time job.

Our Story

This is our story—Paisley and Mom. August 2021 was the beginning of our new lives. Paisley, then 5, woke up daily with foot pain, walking on the sides of her feet, unable to put on socks or shoes, complaining of pain again at bedtime. After the initial pediatrician appointment, we were sent to a rheumatologist who uttered the words "juvenile idiopathic arthritis," and I left the appointment with my head spinning. Arthritis—wasn’t that something older people get? Kids can get it too? What does it do or affect?

Then an MRI and colonoscopy confirmed the diagnosis. Juvenile Idiopathic Arthritis is an autoimmune form of arthritis. It affects the joints by causing pain, inflammation, warmth to the touch, sensitivity, loss of motion, and a range of other symptoms. We were told that Paisley’s was so severe that the bones in her feet were eroding, and the joints were beginning to fuse. If we didn’t take aggressive medical treatment, the damage would become irreversibly damning.

That’s when I was handed a syringe and told that I would be the bad guy—the one to give my sweet little baby not one, but TWO shots every week at home. Not a twice-a-year occurrence, but a twice-weekly occurrence. That year was a learning curve—full of fear, tears, struggles, pain, grief, and sickness, but also fueled by determination, perseverance, love, support, advocacy, education, community, and rising above the ashes.

Just when we thought we had made it through the first rough patch, we were thrown back into a new diagnosis. After confirmation once again from an MRI and colonoscopy, Paisley’s newest diagnosis was Crohn’s disease. I had heard of this but didn’t know much about it. What does this mean? It meant making a choice. We could continue with two injections at home (not our favorite) or keep one injection and add infusions too. Infusions? Isn’t that what cancer patients receive? The choice wasn’t mine to make. Being strong-willed and a confident self-advocate, Paisley was in control of her body. I laid out the positives and negatives of each option. Her conclusion: "Mom, I want fewer pokes. I’d rather do infusions." So, infusions are what we began.

Two years later, symptoms were at bay, and both her gastroenterologist and rheumatologist were pleased. But one little test changed it all. "Your body is creating antibodies against the medication now." Seriously? Not only is her body attacking itself, but now it’s attacking the medicine trying to help. Can we please catch a break? This meant increasing the frequency of infusions, adding a fourth daily medication, plus three meds (including a steroid) before infusions.

I’d be remiss not to mention how much of a warrior Paisley is. She has rolled with all the punches, advocating for herself and her body, not taking "no" for an answer when a doctor doesn’t listen, educating others about the fact that KIDS GET ARTHRITIS TOO, and explaining how her diseases affect her body. Even when I’ve felt the weight of the world on my shoulders because of the pain her body is constantly in, she has taken it in stride, shining her light on those around her, and not holding back from what she wants to do. But damn, I am exhausted. Even when things seem fine, I cannot let up because there is always something—whether it’s a system, a company, or someone to battle. You advocate for your child until your voice is raw and your breath is gone, fighting for your baby, who has had their childhood stolen from them, who has had to mature quicker, who constantly goes through things most people don’t. Yet, looking at them, you wouldn’t be able to tell.

Medical Mom in Our Medical Village

Invisible diseases are a burden, but one worth carrying for our warriors. We smile in front of them, encouraging them to stay positive, while falling apart on the inside—out of fear, out of sorrow, out of guilt for our children. People don’t understand what being a medical mom means, or what having a(n) (invisible) disability entails. You lose friends, but that just means they weren’t real to begin with. You lose sleep, but that’s typical for a parent. You get looks of pity, but not an actual helping hand. You’re told that all you talk about is your child and their diagnosis, but it enraptures every single part of your life. They just don’t get it.

But let me tell you how invigorating and life-changing it is to find a medical village. A village of people, of other moms, whose children are going through the same things your child is. Not only that, but to finally introduce your child to another child going through the same things—the joy it is to be fully, wholly, and completely understood, and that’s without even having to utter a word. Knowing your village, being in their arms, is a gift and a necessity.

Finding Strength in the Struggles

Being a medical mama is not all negative. It is hard as hell, but my girl is worth the exhaustion I feel. It’s a gift to be her mom, to journey this path with her. It’s something you never imagined for yourself or your child, but it makes you appreciate the little things. As cliché as that sounds, it couldn’t be more true. A month without being sick? Rare, but thank goodness. Feeling the warmth on her skin? Her joints feel so much better this way! A national conference for others with rheumatologic diseases? Not only a travel and educational opportunity but a chance to connect with our village in person again!

Everything is in a season of "for now" because each day will be different, slowly working its way to easier and better days ahead. These diseases changed what I thought life would be like for Paisley, but also for both of us together. And yet, these diseases have given us so much. They’ve given us hope for a cure, passion for advocacy, love for those in our village, support for others who walk similar paths, and a renewed thankfulness for health. But most of all, they’ve strengthened our bond like no other—because together, we can do anything, we can overcome anything, we can figure anything out.

Being a medical mama is not for the faint of heart. But when you find us, you’ll find the fire in our hearts, the hard shell we keep to protect our babies, the willingness to step on anyone’s toes to get our child the care or accommodations they need, the fearless spirit, the sunshine through the clouds, and the glue holding our families together.