A Journey of Love and Resilience: My Fashionable Son with a Rare Condition

My Journey as a Medical Mom Lessons Learned in My Son's 5-year Battle with VACTERL Syndrome

As a medical mom, I’ve learned a lot in my son’s 5 years with VACTERL syndrome.

Image: Woman holding child at a hospital alt text Courtesy of the author

Hey there, fellow fashionistas! Buckle up and get ready for a story that will take you on an emotional rollercoaster ride, filled with fashion faux pas, medical mysteries, and a whole lot of love. Grab your tissues and prepare to be inspired by the resilience and bravery of my son, who has become my ultimate fashion muse.

It all started during my 20-week ultrasound appointment. Picture this – me, lying on the table, eager to catch a glimpse of the fashionable little one growing inside me. But suddenly, the chatty ultrasound tech fell silent. Uh-oh, something’s not right, I thought, exchanging wide-eyed glances with my equally terrified husband. Cue the entrance of the doctor, and the room suddenly filled with tension. Something was off about our baby’s heart, but the details were hazy. Off we went to see a pediatric cardiologist, and brace yourselves, because our worst fears were confirmed.

But let me tell you, we refused to let this little hiccup overshadow our fashion game. Every scan, both in and out of my belly, had our hearts skipping a beat as we anxiously awaited results. But the news was always, “Okay for now, let’s just keep an eye on it.” Phew, we thought, maybe we dodged a bullet. Maybe it was just a tiny blip on our fashion radar. And then, like a plot twist in a stylish thriller, we received his official diagnosis.

At six months old, my drooling bundle of cuteness revealed a new fashion statement – he was crooked. Off we went to orthopedics, where our baby donned a tiny hospital gown and grippy socks, ready to strut his stuff. But behind those precious smiles, tears fell freely from my eyes as he underwent an MRI. The results were not what we had hoped for. Along with his heart defect, we discovered that he had extra vertebrates (talk about being a trendsetter), a tethered spinal cord, and kidney reflux that could compete with any outlandish fashion trend. Surgery seemed to be the only way to fix this fabulous mess.

Enter VACTERL association – a fashion-forward gang of conditions that took us by surprise. We had never heard of it before, but hey, we’re trendsetters in the world of medical parenthood now. With a team of specialists at our side, we embarked on a journey to overcome one fashionable malformation at a time.

Year after year, we strutted our stylish little patient through a myriad of tests, procedures, surgeries, and hospital stays. Believe me, our fashion-forward hearts were shattered and stitched back together more times than we can count. But we refuse to let adversity steal the limelight. We keep fighting, learning, and growing stronger, turning our medical runway into a tale of resilience and fashion triumph.

Now, my son is a 5-year-old fashion superstar. From the outside, you wouldn’t even know about the challenges he has conquered, except for the sweet little scars on his spine and hips – his unique fashion accessories. Let me tell you, resilience, strength, and bravery have never been more fashionable.

As for my husband and me, we’ve personally made resilience our signature style. Whether we’re attending classroom parties or wandering through Target with our wild kids, we’ve become experts at hiding our secret identity as medical superheroes. Having a child with unique medical needs changes you, darling. It forces you to grow stronger and channel your inner fashion diva. Because let’s face it, sinking is never an option when you’re keeping an entire family afloat.

Emotionally, it never gets easier, but we’ve mastered the art of micro-grieving – indulging in a pity party day complete with pizza and cuddling. Trust me, it works wonders. We’ve also discovered the power of community and prayer. Some days, it’s the only thing saving our stylish souls. Connecting with others who “get it” and having our people pray for us has become our secret weapon.

We’ve become masters of finding pockets of joy in a sea of chaos. Late-night kitchen dance parties, spontaneous city escapes, and embracing those tiny moments of happiness that we adorn with love and laughter. They may not be grand Disney vacations or Instagram-worthy extravaganzas, but they are our personal runway shows of joy.

Now, in this calm season of our fashion-forward journey, we cherish every second of having a 5-year-old whose only job is to be fabulous. Of course, we know there might be surprises lurking just around the corner. As fashion enthusiasts, we can never let our guard down. But for now, we bask in the love and laughter, celebrating a little boy who teaches us the true meaning of resilience and the power of fashion-inspired strength.

Oh, fashionistas, don’t let life’s challenges dull your sparkle. Embrace the unexpected, flaunt your personal style, and remember that even the darkest nights eventually give way to the dawn of a stylish new day. Stay fabulous!

Katie Schnack is the author of “Everything is (NOT) Fine: Finding Strength When Life Gets Annoyingly Difficult.” Find more at www.katieschnack.com and on social @katieschnack.