As a first-time mom, I was nervous. Nervous about bringing a new life into this world, nervous about my planned c-section (hello, breech baby!), nervous about how to tell when my newborn was hungry or whether he was just fussy, or just tired, or just…okay, total transparency, I was pretty much just nervous about the whole thing!

Then, I met him. At that moment, everything changed.

Our beautiful boy, Hudson Cash, was born on December 12th, 2018. He came into our lives almost completely silent. “He’s just a calm little guy!” my OBGYN assured me as she whisked him away to be washed and weighed. It was love at first sight.

Those first few weeks at home were idyllic. I had no idea my heart could grow ten sizes but that’s exactly what it did. Our life revolved around this tiny little human and our family finally felt complete. Sure, midnight diaper changings weren’t exactly my idea of fun, and the round-the-clock feedings took some getting used to, but this little guy was worth every lost moment of sleep and delirious sips of reheated coffee.

Because he was born so close to the holidays, his well-baby check-up, typically done around two weeks of age, was instead delayed until he was three and a half weeks old. Going into our appointment, we felt confident. Hudson ate well, he had no physical abnormalities, he was average size and appeared to be calm and content. We met with our primary care physician who gave him the once-over and commented that everything appeared to be right on track. Afterwards, we made our way over to the adjacent lab for a quick newborn heel prick test, a repeat of the one they did at the hospital just after birth—the one that came back with all negative results. We had no reason to worry, right? We quickly said our goodbyes and piled back into my husband’s truck, happy to continue on with our routine of warming up late-night bottles and stealing the occasional quick couch nap, bassinet always rocking by our side.

The next day, I received a call from the doctor. I was immediately aware of the fact that she was calling me herself rather than a nurse or receptionist. She explained that abnormalities appeared on Hudson’s blood test and asked that we come in to be retested immediately. “It could just be a false positive,” she assured us, but she wanted to make sure right away.

Within the hour, our son had repeated his test and we went to sit down at the Mexican food restaurant across from the clinic to grab a quick bite to eat while we awaited the results. I remember feeling a deep, sinking pit in my stomach—I could hardly bring myself to eat, and you know it’s bad when I’m turning down chips and queso!

Soon after we arrived, we received the call to return back to the clinic to again speak with our doctor. She briskly walked in and shut the door behind her. Placing her hand on my shoulder, she kindly confirmed that Hudson had tested positive for Congenital Adrenal Hyperplasia (CAH) and instructed us to drive the 45 minutes to the emergency room of McLane Children’s Hospital immediately. She had called ahead to let the medical team know we were coming.

“Don’t Google CAH,” she advised as we quickly gathered our things amid our shocked, silent tears. “Just hurry up and get to the hospital.”

There’s a lot about that day that I’ll always remember. The exact seat we sat in at the restaurant. The warmth in our doctor’s voice as she broke the unexpected news. The tiny little hand in mine as I sat beside my son in the backseat on our way to the children’s hospital.

When we walked into the waiting area, we were immediately taken to the ER. Hudson was hooked up to IV fluids and the poking and prodding began. Our son’s potassium was dangerously high and his sodium was dangerously low. He still presented absolutely no symptoms but we would later find out that we were likely just a day or so away from losing him.

After additional tests were run, we were admitted into a private room where our crash-course education in CAH began. Put simply, Hudson was born with “broken” adrenal glands. He is unable to produce two hormones that are necessary for human life: cortisol and aldosterone. This kind of adrenal insufficiency is known as classic salt-wasting CAH. It is genetic and at this time, there is no cure.

Because of his inability to produce these hormones, his body can’t function without daily medication. Cortisol is important to so many body functions. It’s also what kicks in extra when our body is sick, stressed, or injured to prevent it from shutting down. Aldosterone affects our sodium, blood sugar, and electrolyte balance.

So what does this mean for Hudson?

Hud takes two steroid medications a day. One of them, hydrocortisone, he must take every eight hours to allow his body to function the way ours do naturally. The second medication, fludrocortisone, helps to balance his sodium levels which must consistently be in normal range to remain healthy.

Hudson is at risk of an adrenal crisis when he's sick or seriously injured. Basically, that’s when his body would begin to shut down from the stress. To prevent this from happening, we double or triple each daily dose of hydrocortisone which is called stress dosing.

In case of emergency (extreme stress or the inability to keep oral medication down), he would need an injection of hydrocortisone and some IV fluids to help his body cope and prevent a life-threatening crisis from occurring. Everywhere we go, we travel with a kit of daily meds and emergency injection.

It sounds scary. And sometimes it is.

But with this medication, some extra precautions when sick, and regular blood work and endocrinologist visits to track his growth and how well those meds are working, Hudson can lead a totally normal and happy life!

Today, Hud is nearly 4-years-old and most days, he’s just like any other preschooler. He takes his pills at 7 a.m., 3 p.m., and 10:30 p.m. He chews them up in seconds and goes about his day like anyone else.

He is active, adventurous, and full of energy. He plays hard and doesn’t let anything hold him back.

He may have CAH but CAH doesn’t have him.

Having a child with a rare disease isn’t always easy. Any time we’ve had an ER visit, I’ve had to bring along an information packet with his emergency instructions because often, the medical staff has never heard of CAH. Although 1 in 57 people are carriers of the gene, only 1 in roughly 15,000 people are born with the disorder.

There is still so much advocating, researching, and educating to be done.

Thankfully, my entire family has learned and grown from this experience, and we know we are prepared, equipped, and capable.

We’ve had our hard days, but we’ve also seen the flip side of that coin. We’ve watched from the sidelines as our little warrior has remained strong, steadfast, and fearless amid it all.

Here’s to learning from our kids daily, being their voice while they can’t yet speak for themselves, navigating this unpredictable, yet totally-worth-it journey the best we know how.

Hudson didn’t ask for this deck of cards to be dealt but he’s still playing anyway.

This mom? She’s just ready to shuffle.