My husband and I were stuck without a caregiver for our oldest child, who was 2 years old at the time. Our nanny, Jaime*, had been with us for one year when she gave her notice. We were happy that she was moving on to better things, but dreaded starting the nanny selection process again.

My son’s health added a layer of complexity to our caregiver search. Our 4 year old son was born with a rare genetic condition. It is so rare that he is the only one on the planet with this particular mutation. The condition has dramatically altered his bones, which has caused three broken femurs.

I woke up one morning when he was an infant to find a pointy bone growing out of his chest. It did not cause him any pain. So, I did not think much of it.

The arms and legs, to some degree, can be fixed through medical interventions, specifically metal rods surgically inserted into the bone. Moreover, his rib cage was significantly smaller than most, and this cannot readily be fixed. In simplest terms, small rib cage equals small lungs, which means that you are kind of screwed in the whole breathing department.

Hiring someone who 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 and afraid to speak my mind to stand up for myself or ask questions that might make others uncomfortable. Unfortunately, being painfully passive is not an ideal precursor to successfully finding the ideal caregiver. It is a;so not 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. I never really felt that instant connection I had with Jaime. I was starting to get nervous. Her last day was approaching.

Then, we met Mara*.

I liked her right away. She was also a mother to a young child and comfortable with cooking meals. She was able to could start immediately, agreed with the hours and pay, and had an interest in alternative medicine.

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At the time, I looked at this last item with enthusiasm, which had always been an interest of mine. 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.

I was the girl in university, who briefly considered steering away from a Bachelor of Science to become a Naturopathic Doctor. I looked down on people who ate poorly or who took antibiotics. Only if they knew all the secrets I did!

The first few weeks with Mara went exactly as expected. My son would scream for about half an hour every time we left the house. His temperament had always been slightly explosive. It was 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. Then, Mara was starting to get become weird.

Since my son had ongoing issues with his lungs, we were prescribed medicine to give him, via an inhaler. This medicine, Salbutamol, was to be given on an “as needed” basis whenever he appeared to be wheezing or had trouble breathing. It was pretty straightforward. In other words, blast the boy as often as needed.

Although, Mara had other plans. At first, she accepted her duty as the primary inhaler administrator. After some time, she suggested that we give 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.

In addition to his breathing issues and fragile bones, my son was and is an incredibly picky eater. He was always on the extreme side. So, we instructed Mara to offer anything and everything (even if that meant a lunch consisting of Chips Ahoy and chocolate milk).

Mara patiently listened to our wistful pleas to get him to eat more and decided to feed him an exclusively vegan diet. She was often confused as to why he would not eat her tofu/quinoa/sweet potato meals.

At the time, I appreciated her effort and liked the idea of him trying new foods. I thought that maybe she would find something new that he would consistently eat. I was wrong. He would often beg for snacks the moment I got home from work.

The ever-present guilt about leaving him each day was slowly magnified a hundredfold. In addition to leaving him with someone who he did not like, we left him with someone who refused to feed him stuff that he might eat.

A couple of months after Mara started, our son was put on antibiotics for an ear infection. She refused to give him his medicine, not even a single dose, citing that we did not explicitly include this task in her duties. In an epic argument with my husband, she confidently stated that her daughter had never received any vaccinations. That is 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 also conveniently the truth, but far from our primary reason for dismissing her.

After Mara’s departure, I helplessly watched our son’s health slowly declined. 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 my son’s tiny body went limp and lifeless. He had a cardiac arrest caused by rapid lung failure in the elevator. After a lengthy resuscitation, 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 any alternative scenarios.

What if there was traffic that morning or 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?

I am now righteously bold when it comes to the well-being of my loved ones. I hired a nanny this past August, and interviewed her with a million questions. In addition to reviewing her experience with children, I asked for her honest opinion on modern medicine.

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

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Since the cardiac arrest, my son’s health has slowly improved. The lung disease is under control, and he is off almost all medications. Aside from occupational therapy and a handful of upcoming orthopedic surgeries, he is a generally happy fellow who can kick my butt at Super Mario U.

My husband and I were handed a bad deck of cards. We were given the number one parental fear: the possibility of outliving our child. Although, this fear is tempered with some newly discovered 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 am slightly more preoccupied and tired, but less tolerant of all the bad things in the world. So, I will proudly remain this way as long as my son needs someone to fight for him.

This * signifies that names have been changed to protect the identity of the people mentioned in this article.

This article originally appeared on the Sammiche Psych Meds blog.

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Photo credit: Pixabay