The World of Work with a Sick Child

— This article represents my experience. Each experience is different and unique. In this article, the term “sick child” implies severe illnesses that require many appointments, hospitalizations, etc.

I have often been told that I was brave. I don’t agree. Even if it’s very stressful, my son is the one who suffers, not me. My job is to help him get through it in such a way that he can lead as normal a life as possible, reducing his burden as much as I can.

The medical hurricane

In reaction mode

During medical appointments, the parent reacts, absorbs all the information given by the medical team, follows the necessary routines, tries to complete his work when his child sleeps a little. The parent lives, operates, always on the lookout, eyes sharp and dark circled. He juggles with appointments, medication, protocols, work, school or daycare, home maintenance, groceries, so basically, life! Does he wonder if all of this makes sense? No, there’s no time. He reacts.

“Work, hospitals, son, workload, appointments, planning, medication, emails, follow-up, ER... My life, our hurricane.”

He was only a few months old when we started our stays at the ER. Every week we were there. As soon as a treatment ended, we were back. Each time the same diagnosis, each time more medication. When we got lucky enough to get a wonderful pediatrician, the damage was already done, but we didn’t know it yet.

That’s when we started appointments with specialists, all kinds of medications, trials and poor results.

Then, a blood sample was taken “just in case” for a rather rare condition. His doctor had only seen this in six patients during his career, so we tried not to worry too much.

The diagnosis had been made. Critical illness with a fatal outcome if the medication isn’t given fast enough.

Time and our hearts stopped.

That’s when the adrenaline rushed into our lives. Constant, dangerous in the long term, but allowing us to operate. The medication taken for disease A, too severe to be controlled, caused disease B. A vicious circle: one would not stop until the other was under control, or even cured. Two critical conditions.

Two remissions later, at the end of 2018, a relapse is still possible. He is still in remission, but each virus brings its share of concern and the atypical and impressive medication doses still don’t help. The most complicated case of their two careers, the worst sense of helplessness of our lives.

The professional hurricane

How does it work?

“Daycare is calling me, do I have to get to the ER? I have to leave, but I have children under my care, how can I leave... But I NEED TO leave!”

All of this is happening with both of us, working more than 40 hours a week, all while being separated.

I work, but my brain is in two places at the same time, at all times. Worrying is constant and will never calm down, even during the few breaks we have. Why don’t I stop working? Because I have to pay for my house. Why a house? To ensure that my son has a quality of life, with conditions adapted to his medical needs, and that he can lead the most normal life possible.

Is the world of work adapted to such a life?

Absolutely not. Are the bosses to blame? Not at all. The situation is as difficult for both of them. The boss of the parent who has to leave abruptly because he has to get to the hospital, must ensure that the work is completed. The parent is 1,000% focused, if not more, on his child, but knows very well that he will have to finish his tasks afterwards, because his work must be kept to support the child and he needs to have access to the insurance that will cover, or to simply be able to pay for, the annual $5,000 (in our case, but sometimes much more) of medication and the $10 to $30 daily parking fees.

I had a job that I loved, but after 4 years of following this infernal routine where I worked, my cell phone grafted on my hand, never knowing if I would have to leave in a rush to get to the hospital, I had to face the fact that a change was inevitable.

“The oxygen mask concept is much easier said than done.”

I was doing everything for my son’s health, but it was mine that would fail if I continued at this rate. To be honest, I have never really cared about my health, because the priority has always been my son’s, but I have been reminded time and again that if I weren’t there to take care of him, it would be even worse. It’s not an easy thing. Believe me, the oxygen mask concept is much easier said than done.

That’s when I was offered the chance to work from home. I felt like I was leaping into the void and it was very scary. I was leaving a permanent position and a pension plan, a promised stability.

Changing jobs was still the best decision I ever made. I now have the opportunity to work remotely, with a flexible schedule. I work 60 hours a week, sometimes more, but when the school calls me for an emergency, I can leave quickly, because I am close by, always available if needed.

I have this chance and this chance, I had it thanks to the company I work for, TLC. I am and will always be grateful for it. Less weight on a parent’s shoulders is huge. Even if my son’s medical challenges keep coming and do not improve, I am lucky enough to be there, one huge weight off my shoulders.

Creating foundations to support the too many tons of bricks

“We don’t learn that our child is sick after having put everything in order and planned an optimal professional situation.”

The world of work is very difficult to access and is ill-suited to parents who have to devote most of their time to treatments and to their child’s many appointments and other follow-ups. That’s the reality. Not all parents can afford remote or even flexible work that will allow them to support their family financially. Are there any solutions? Most likely. Do we know them and have access to them? Personally, I don’t know.

What I do know is that parents who have a sick child do not have the time or energy to seek such a solution. They react. They live and function as best they can. We must remember that we don’t learn that our child is sick after having put everything in order and planned an optimal professional situation. It comes down on us, a ton of bricks at a time.

For those parents who are not as lucky as I was, I am wholeheartedly with you. I call out the work universe, so that viable solutions can be found to help remove the weight that parents of sick children carry daily. So that we find a way to add foundations to support one of the worst things that can happen to a parent, receiving those tons of bricks, the disease of their child.

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Valérie Pichette

— Dedicated mom and ambitious professional.

Where people see challenges, I see opportunities and motivation.