Benaiah

Nineteen. That’s how many days we had with you before we realized how much you were up against.

When you were born, everything looked perfect. On your first day home, you stopped wanting to eat. By Day 3, your skin was tinged with yellow, your cry was high and pitiful, and you slept constantly. At only one week old, you faced down a laser procedure to try to help you feed. It was on Day 11 your eyes began to tremor. On Day 13, I took you to the hospital for bloodwork. On Day 17, we went back to the hospital and you were admitted.

But it was on Day 19 that you had your first brain scan and we saw you were in trouble. It was hard to swallow the fight you had ahead of you. And how quietly you had been fighting it on your own for 19 days.

“He’s going to be okay,” Dr. Bello laid aside his clipboard and sat down next to you and me.

“How?” my voice trembled. “You’re telling me his ventricles are so huge they’re leaking, he has cysts in his brain, and part of his cerebellum didn’t even form?!? How will any of this be okay?”

“It’s difficult to know, with little babies, how hard this will be,” he explained quietly, “Some of them go on to have profound difficulties. Some grow up to be physicists and you would never know that anything was wrong. But did you know that I also have an arachnoid cyst, just like Benaiah? And look at me, I’m a brain doctor! Let’s not lose hope yet for all he may still be able to learn and to do.”

I thought back to the moment we decided we wanted to have you. Sitting with coffee on the coast of Madang, Papua New Guinea, reflecting on the new life we had built, and gazing out at the perfect water. I had such a rough first pregnancy that it took me three years to gather the courage for another one. But oh, how badly we wanted you. And I hold onto that, especially in the moments when it feels we have lost that life and may never be able to return to it.

“Children change everything.”

I remember Dr. Gillespie’s gentle voice, breaking into my thoughts and straining to temper the harsh news as it broke over us. Everything was different now. You were not okay. She knew it. We knew it. And she helped us frame the reality our frazzled minds were trying desperately to wrap themselves around: we needed to drop everything and fight for you. We were blind-sided, but we didn’t hesitate. You are worth dropping everything for.

“Great! His medicine will be ready tomorrow, around 1:00 pm. Can you come back then?”

This was the defining moment where I changed, from a puddle of tears into your mama bear. Up to this point, I was drowning in unfamiliar territory, deferring to the guidance of professionals who knew better than me what was best for you. The surgeon wanted more time to give you a better shot at surviving surgery. The neurologist suggested Diamox: it was a shot in the dark, but maybe, just maybe it could help you. We had two weeks of waiting to walk through before your next scan and I was helpless to do anything for you, except get this medicine.

We sped to the pharmacy near our house to pick it up after your discharge, but they told us it could only be mixed at the hospital. So I took a deep breath, turned around, and drove the hour back to the hospital. You fell asleep on the way.

I remember my trembling, weary jaw dropped when the sweet, unsuspecting pharmacist told me to come back tomorrow. And suddenly, something else was more important than being agreeable.

“No,” my voice (and my heart) cracked, “tomorrow doesn’t work.”

“Oh. Should we fill it later this week then?”

Tears slipped down my cheeks. “How long does it take to mix the medicine?”

She squinted at the computer and looked up at the ceiling as her bright, rested brain deftly worked out the mental math. “Usually about 10 minutes.”

I pointed to you, sound asleep in the car seat.

“Do you see this brand-new baby? His brain is swelling. He has been getting worse every day for a week and a half. And we have to wait for surgery, so this medicine is the only thing I can do for him. No, tomorrow doesn’t work. Please, I know you have a lot you’re juggling, but can you find 10 minutes today?”

“I didn’t know.” Her eyes widened. “Thank you for telling me, I didn’t know. Yes. We’ll make it right now.”

On Day 22, the eye tremors stopped.

Words could never be enough to describe the waiting. In ER’s, in hospital rooms, in waiting rooms, at the pharmacy, when you had a procedure, waiting for radiology reports, waiting for someone to explain the radiology reports. The tension whenever you were sick or teething or extra crabby or extra sleepy. The dull, unending ache as weeks between scans stretched to months between scans and still the doctors couldn’t say if you were going to take a turn for the worst. The breath-holding as we slowly backed off on your medicine, daring to believe you might be compensating. The prayer over every judgment call that we were doing the right thing for you. The unbelievable heaviness of the unknowns that are never really resolved when hydrocephalus is part of your life.

Our people would have given anything to be able to change what we were facing. But man, did they showed us the value of holding an umbrella over someone when you can’t stop the storm that has torn through their life. They brought groceries, they brought meals, they wrote down words of comfort, they got on their knees day after day and begged God to help us, they took your lively big brother to the playground, and bought him ice cream, and gave him light-hearted days, they let me laugh about how the hold music on the phone triggered a deep, involuntary rage within me, and they held me as I cried in despair and overwhelm because I had so many appointments left to schedule, and I had no answers for how this would turn out. So many people helped dampen the storm so that I could hunker down in the recliner to snuggle and savor you. And those baby snuggles are some of the most treasured moments of my entire life.

I don’t know if I’ll ever have the words to describe the journey we have already been through together. But I can try to tell you what a privilege it has been to carry you through all that waiting. To take in your sweet smile. To hold you close and breathe in your sweet scent. To rock you and sing to you and steal moments that felt normal. What a privilege it has been to witness you overcoming. To watch you, totally unaware of the odds that were against you, lift your small fingers from the ottoman, stick out your foot, fall forward, and land your first step. A step we weren’t sure would ever be possible, one year before. A step that set our living room into an eruption of cheers and applause that might as well have chorused the first step of mankind on the moon if you measured it by the thrill of those who had the honor to witness it.

Though the dawn of your small life held so much struggle, you have always been marked by the sweetest, most pleasant demeanor. What a joy you are. Who knew that joy could be this deep? 755.

That’s how many days we’ve shared together since Day 19. And here you are, looking up at me with your cheeky, 2-year-old grin, signing that you’re hungry and you want milk as your eyes shine with mischief because you have already pulled all the milk out of the fridge and decorated the entire house with scattered cereal.

At this point we’re still waiting on a lot. The recommendation to operate slowly changed, one provider at a time, and for now, they’re all saying no brain surgery. We’re waiting on testing for your hearing, we’re waiting on the next round of brain scans, we’re waiting to see if you’ll keep tolerating being off your medicine, and we’re waiting for you to find your voice. But I’m starting to learn how to dial down the volume of all the worries that come with waiting. I’m learning to dial in on what we have in front of us, and what a miracle you already are on this day.

I wish I could show a glimpse of Day 755 to you and I when we were holding each other through the strain, brokenness and pain of Day 19.

It’s still hard, but it’s not only hard. And yours is a good story that’s worth sticking around for.

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Hippocephalus: A Tale of Hippo Hope for Kids Facing Medical Challenges

I’m Beka Burns, the mother of a courageous 2-year-old son with hydrocephalus. I wrote a book called “Hippocephalus: A Tale of Hippo Hope for Kids Facing Medical Challenges“. This story is inspired by my son Benaiah’s journey, but with hippos as the main characters.

In this book, you’ll find a gentle guide to understanding what it’s like to receive a hydrocephalus diagnosis and what to expect as you navigate through tests, scans, and procedures. My hope is that for those of you facing your own Day 19, this book provides a tender script to help you talk about it and quietly reminds you not to give up. Hard stories can still be good stories.

DISCLAIMER: “Hippocephalus: a Tale of Hippo Hope for Kids Facing Medical Challenges” is not a publication of the Hydrocephalus Association (HA). HA is in no way responsible for the content contained therein and cannot vouch for its accuracy.

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