By Jennifer Philp of Branko Has Funny Bones

My husband and I were stuck without a caregiver for our then 2-year-old son, Branko. Our nanny, Jaime*, had been with us for one year when she gave her notice. We were happy she was moving on to bigger and brighter things but dreaded having to go through the nanny selection process again.

My son’s health added a layer of complexity to our caregiver search. Branko, now 4 years old, was born with a rare genetic condition, so rare he’s the only one on the planet with his particular mutation. The condition has dramatically altered his bones, which don’t function or grow properly. Our tally, so far, for broken femurs has just hit three.

I woke up one morning when he was an infant to find an actual, pointy bone growing out of his chest. It didn’t cause him any pain, and other than taking photos to capture the icky-but-kind-of-cool factor, I didn’t think much of it. It was par for our parenthood course.

Arms and legs, to some degree, can be fixed through medical interventions, specifically metal rods surgically inserted in bone. But Branko also has a small rib cage, and this can’t readily be fixed. In simplest terms, small rib cage = small lungs = you’re kind of screwed in the whole breathing department.

Hiring someone whom we felt was capable, and quite frankly, cool with the idea of being in charge of a kid with fragile bones was no easy task. I love my son more than anything in the world, but I was a disorganized mess. I had always been a passive person, afraid to speak my mind, to stand up for myself or ask questions that might make others uncomfortable. Unfortunately, being painfully passive isn’t an ideal precursor to successfully finding a caregiver for someone you love. It also isn’t the best quality to have when you are one of the primary advocates for a medically-fragile boy.

We interviewed person after person and nothing felt right. The applicants were just okay, and I never really felt that instant connection I had with Jaime. I was starting to get nervous. Her last day was approaching.

And then we met Mara*.

I liked her right away. She had many positive things to offer: also a mother to a young child, comfortable cooking meals, could start right away, and agreeable with the hours and pay we offered. She also had an interest in alternative medicine.

At the time, I looked at this last item with enthusiasm. This had always been an interest of mine, and the young, impressionable 20-something me from a million years ago would have firmly believed the secrets to human health could be unlocked through food and plants and oregano oil. I was the girl in University who briefly considered steering away from a Bachelor of Science to become a Naturopathic Doctor. I looked down at people who ate poorly or who took antibiotics because IF ONLY THEY KNEW ALL THE SECRETS I DID!

The first few weeks with Mara went exactly as I expected. Branko would scream for about half an hour every time we left the house. His temperament had always been slightly explosive, partly due to chronic pain and the frustration of not being able to walk, but mostly due to a shy personality and a slight fear of strangers. I kept telling myself this was normal, that he was just getting used to her, and that the crying would stop “any day now.”

I was very wrong. The crying continued. And Mara was beginning to get real weird.

Since Branko had small lungs and breathing issues, we were prescribed medicine to give him via inhaler. This medicine, Salbutamol, was to be given on an “as needed” basis whenever he appeared to be wheezing or “working” harder to breathe. It was pretty straightforward, and our philosophy was to be fervent with it. In other words, blast the boy as often as needed.

Mara had other plans. At first, she accepted her duty as primary inhaler-giver. After some time, she suggested we start giving him goat’s milk to help “clear up his lungs.” I noticed the inhaler was always on the couch when I got home, but I had no idea if she was ever actually using it. I tried asking Branko, but asking a 2-year-old to say one truthful thing about his day was about as useful as talking to a highchair.

Branko was an incredibly picky eater. He was so frail and small that we instructed her to feed him anything she could, and if that meant a lunch consisting of Chips Ahoy and chocolate milk, then so be it. Mara patiently listened to our wistful pleas to get him to eat more, then decided to feed him an exclusively vegan diet. She was often confused as to why he wouldn’t eat her tofu/quinoa/sweet potato meals. At the time, I appreciated her effort. I liked the idea of him trying new foods that I don’t usually prepare. I thought that maybe, just maybe, she would find something new he would consistently eat. I was wrong. He would often beg for snacks the moment I got home from work.

My ever-present guilt about leaving him each day was slowly magnified a hundredfold. In addition to leaving him with someone he didn’t like, someone he wouldn’t stop crying around, we left him with someone who refused to feed him stuff he might actually eat.

Branko was put on antibiotics approximately 2 months after Mara became his nanny. She refused to give him his medicine, not even a single dose, citing that we did not explicitly include this task in her duties when she first took the job. In an epic argument with my husband, she confidently stated that her daughter had never received any vaccinations. That’s when everything clicked.

We fired her immediately. In my predictably passive fashion, I told her we could no longer afford a nanny and that my husband’s parents were going to step in and help out. This was, conveniently, also the truth, but far from our primary reason for letting her go.

Branko’s health slowly declined after Mara left. One morning, after noticing his hands were ice cold, I casually mentioned to my husband that he might want to take him to the doctor. My husband barely made it to the lobby of our local children’s hospital before Branko’s body went limp and lifeless. He had a cardiac arrest caused by rapid lung failure in the elevator. After a lengthy resuscitation and the worst 8 hours of my life, he was declared stable and spent the next month recovering in the hospital.

We never told Mara about the cardiac arrest because I needed to temporarily forget she existed in our lives. I was haunted for months about all the what-if scenarios. What if there was traffic that morning? What if the hospital elevator was broken? What if Mara had been alone with him? Would someone so passionately reluctant to follow the medical advice of a doctor have the inclination to call 911 and ask for help?

I am now righteously bold when it comes to the well-being of the people I love. I hired a nanny this past August and interviewed her with approximately one million questions. In addition to reviewing her experience with children, I asked for her honest opinion on modern medicine, how she felt about the flu shot, and how many colds she typically gets in a year.

I am now someone who isn’t afraid to stand up to those who, by choice, put other human beings in potentially negative situations. And yes, this includes anyone who has the luxury to criticize modern medicine. In addition to being more direct and forthcoming, I have about zero reservations towards telling someone to fuck the hell off when it comes to my child.

Since Branko’s cardiac arrest, his health has slowly improved. His lung disease is under control, and he is off almost all medications. Aside from intensive physical and occupational therapy, as well as a handful of upcoming orthopaedic surgeries that will leave him in casts for weeks at a time, he’s a generally happy fellow who can kick my butt at Super Mario U.

My husband and I were handed a shitty deck of cards. We were given the absolute number one parental fear: the possibility of outliving our child. But this fear is tempered with some newly discovered bravery and strength, suppressed by years of living to please others. They say that having children changes you, and in my case this change is quite dramatic: I’m slightly more preoccupied, much more tired, but less tolerant of all the bad shit in the world. And I will proudly remain this way so long as Branko needs me to fight for him.

*names have been changed

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About Jennifer Philp

Jennifer is a teacher and mother of two kids. Her son was born with a rare genetic disease that has resulted in a variety of serious health conditions, two of which are a penchant for Dora and all things Thomas. She writes about him at Branko Has Funny Bones and can be followed on Twitter and Facebook.