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‘I gave life to three healthy baby boys… or so I thought. Healthy? Not so much. Boys? Even that would be subject to change.’

This post was submitted to Children’s Miracle Network Hospitals by Kelli Kurtz for our By Real Moms series. You can follow Kelli on Instagram and Twitter. Submit your own story here. Watch Real Moms here or join the Real Moms group on Facebook to see and share more stories of parenthood and motherhood.

I’ve put this off for so long. How do I put into words my story as a mom of these three incredible humans? Each with their own story and history of complex medical, emotional, and life circumstances? My journey as a mom began in 1997 when I gave birth to a beautiful baby boy. I would go on to give life to three healthy baby boys… or so I thought. Healthy? Not so much. Boys? Even that would be subject to change.

Our journey with health challenges began in 1999 when our oldest developed periorbital cellulitis. Our experience with children’s hospitals had been limited to urgent care visits for falls, viruses, fevers and the ubiquitous myringotomy (ear tubes)—the true badge of parenthood for most moms and dads. We were promoted to the rank of inpatient newbies in 1999 with a very sick toddler, pediatric rounds, specialists fighting for territory, and talks of brain abscess. One incredible superhero nurse taught us the basics of advocating for our child and taking charge. Thanks to him, we worked with our medical team to find the right treatment and were discharged a week later, on Christmas Day no less, with a plan and three pending sinus surgeries in our near future. That was just the beginning of a medical melodrama that still follows us today. 20 years later and I could give Shonda Rhimes a run for her money. Here’s how the storyboard would read:

Boy #1–the number of sick days outnumber his well ones from his first bout of pneumonia at 5 months old. His story arc, “the toddler years,” begins with periorbital cellulitis and continues through age 4 with three sinus surgeries and the recommendation from our ENT that he’s just not a candidate for the cesspool that is daycare. Thank God for neighbors who become family and offer to babysit because being a stay-at-home mom does not pay the mounting medical bills.

Boy #2–a routine appendectomy (which just happens to be performed by the top colorectal surgeon in the world who is rounding on the floor that day) also unveils polycystic kidney disease in the CT scan and earns us fast passes to new specialties in genetics and nephrology.

Boy #3–back to the basics with an adenoidectomy at 4…easy peasy. Until age 10 when the leg cramps start. Plot twist…these growing pains/leg cramps were really focal seizures in disguise followed by episodes of cluster and tonic-clinic seizures, brought on by a rare DNET (dysembryoplastic neuroepithelial) brain tumor in the right frontal lobe, motor cortex. This discovery was anything but simple… taking nearly two years of ER visits, hospital admissions, testing, misdiagnosis, and hysterical mama bear calls and emails to physicians before we would find answers. Add to this melodrama a craniotomy and brain resection (brain surgery), and now all that comes with the reality of TBI (traumatic brain injury) for brain surgery patients…cognitive challenges from TBI and everyday seizure meds for epilepsy, school intervention plans for IEPs and 504s.

Boy #1–after many lectures from mom and dad about the unhealthy habits of the teenage years causing fatigue, brain fog, broken sleep cycles, etc., we discover several vitamin deficiencies, alarming blood work, and high blood pressure…for an 18-year-old. Welcome to the family, polycystic kidney disease diagnosis #2. Add one more nephrologist to the lineup as well as 5 new prescriptions to our pharmaceutical arsenal.

Boy #2–in addition to his polycystic kidney disease diagnosis at age 6, he struggles with self-esteem, school, and navigating life. Many specialists during the grade school years and a diagnosis of sensory processing disorder and school accommodations, and we still feel as if something else is going on. Puberty hits him hard and he withdraws from our family and from friends. Finally, at the age of 14, he shares with us a new reality. Boy #2 isn’t a boy after all. —insert cliffhanger—

Daughter #1–She is transgender. That is grossly oversimplifying the complex, emotional rollercoaster of helping your child who suffers from gender dysphoria in a mostly uneducated, unaccepting, judgmental world. But it’s the new hand we’ve been dealt. We become well-versed in mental health care and the stark reality that there’s not enough of it. We wait 18 agonizing days for our daughter to be placed in an outpatient mental health program when we discover that she wants to take her own life. We have our first experience with a safety plan—locking up any and all medicine, knives and razors (aka “sharps”), belts, ropes and anything that can be used for hanging. Although by now we’ve experienced numerous life-threatening illnesses and surgeries, this period of mom-ing takes me to my knees.

Boy #3–we had been reassured by many that the odds would be in our favor and he has an excellent chance to avoid the family fate of inheriting polycystic kidney disease. We heard time and again that rarely do all the children in the family inherit the disease, so since he’s on seizure medication every day, let’s go ahead and get the ultrasound to rule out PKD on this third child. Of course, you know what that means. We’re 3-for-3. All of our children have PKD. All will likely have kidney transplants in their futures and, since my husband also has the disease, the diseased kidneys outnumber the healthy ones in our family 8:2. I would be crushed by this if my barometer for hard medical diagnosis hadn’t already long been broken.

And that’s just season 1. I’m hoping this particular melodrama is canceled and we can resume normal programming. Not that normal programming has EVER been part of our story…but a mama can dream!

My journey as a mom and fierce protector and advocate for my kids continues. It’s been 20 long years since our first scary diagnosis. Being knocked around has enabled me to develop a pretty thick skin. But what most people don’t see, is a soft interior that frets, and questions and sheds tears for the hardness of life most days. Mine is a story not unlike many moms out there who just want the best possible lives for their kiddos, and they are willing to fight like hell to give it to them. When I don’t know how to go on, or where to turn, I add experts to my team, I practice self-care (although not as often as I should), I eat mashed potatoes and drink the occasional glass(es) of wine, I laugh and cry with friends, I thank God for an amazing husband, life partner, and dad for our 3 blessings, and I work on my spiritual well being and find comfort in knowing that the higher power who brings me peace also celebrates the triumphs and cries in the deep valleys alongside me. And at the end of each day, I give thanks to God that he chose me to be their mom. ❤️

This post was submitted to Children’s Miracle Network Hospitals by Kelli Kurtz for our By Real Moms series. You can follow Kelli on Instagram and Twitter. Submit your own story here. Watch Real Moms here or join the Real Moms group on Facebook to see and share more stories of parenthood and motherhood.

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