Blog · December 4, 2018

When Caring for Your Medically Fragile Child is a Full Time Job…

It’s often a full time job caring for a child who is medically fragile.

We are not only parents; we become nurses, therapists, chauffeurs, companions and more. For some of us, the needs of our child are so time consuming that working outside of the home becomes impossible and impractical.

Thankfully, certain cities, counties or/and states realize this and help. Many children with disabilities receive support, and as their parents it is our responsibility to fill out the mountains of paperwork and jumping through the bureaucratic hoops to get them services, and sometimes it’s hard to even find the support.

I wrote this in my book Butterfly Child:

It is amazing to me how remarkably difficult it is to locate the services that do exist. Hunting for resources can be an experience comparable to being in a labyrinth. Here I was, thinking California didn’t care about the disabled, and I was completely wrong, mostly because no one seemed to know exactly what was available for whom under what circumstance. Some programs are funded by the state, some by the county or town, and many others are affiliated and funded by private organizations, churches and hospitals.

And when you figure out who can help, the support available can vary quite a bit.

I knew right away after my son was born that I would have to be forced into making a choice between my career and my child. But I wasn’t alone. According to a survey done by The National Survey of Children With Special Health Care Needs, more than 30 percent of parents end up leaving their employment to care for their child. Reasons varied depending on the severity of their child’s condition and the support available to them.

For one, daycare facilities that care for disabled children are non-existent. The only way a parent can work is if someone else can watch their child. Without a proper Nursing Daycare (Regular daycare can be dangerous and even life-threatening due to the number of germs they are exposed to on a daily basis), they will need some kind of nanny/nurse or a family member trained in caring for the needs of their child. In other words, someone has to be responsible for that child in every way while you are working. For families with a child with significant and specialized needs, finding adequate care can be impossible. Nurses’ salaries can be financially impractical for many families, and it may be a challenge to get the insurance to pay for them. My insurance never did. They claimed “I knew how to do it” and that was their excuse.  In the end I had no choice. My only option was to stay home.

When my son was little he had a LOT of Doctor’s appointments, multiple doctors, even some out of state! This meant that if I worked I would have had to take off work to take these multiple trips every week. Nicky also had some unexpected emergencies that would take much time out of my day.  The harsh reality of working in a capitalist society is that an employer is not going to put up with this. This is an economy not built with “people” in mind, but on profit and losses, so every single employee is expendable.

Another time-consuming task is the bandage changes, which happen daily. I used to love talking on the phone, but nowadays I much rather text. I am not ignoring you, I am either taking care of my son or I am prioritizing my time.

Over the past decade or so I’ve spent my time writing, blogging etc, but I would not consider it a “job” per se, as it does not pay any of the bills. What pays the bills is the programs Nicky is on and the IHSS provided by the state of California so that I can stay home to take care of him. As he’s gotten older he’s gotten easier per se, but he’s not independent enough for me to leave him home alone for more than a couple of hours. When I did work part-time and went to College Nicky was still going to school, so I had a few hours of freedom every day. I no longer have that luxury. I have to be by his side, period.

So, if I watch a lot of TV and read a lot of books, you know why. I don’t even go to see movies at the cinema simply because I don’t feel “right” in leaving Nicky alone for a few hours just to go see a movie. I can just wait for it to be available on Netflix DVD, which nowadays it’s only a few months. It’s no biggie. I pause my shows often sometimes to answer my son’s calls and we watch TV together while changing bandages. This is our “normal”.

Nicky and I smile when people we know cringe at the thought of “bandage changes” is a “normal” to us.
But what is “normal”? I’m not sure anyone lives a truly normal life because normal is only a concept based on our tiny little pocket of our world and what we know within our own experiences. What’s normal for me it’s not normal for my neighbor or even another EB family. What’s normal for us in California is not normal in Maine. What’s normal in the US is not normal in Afghanistan. and what’s normal for one generation is not for the next. Normal is entirely based on perception. Our perception is bandages. Our perception is a life at home. That’s our normal.

The normality of my life the way it was before Nicky was born has disappeared and there is not going back to it. It’s been replaced by my beautiful son.

Love & Light,