The Unexpected Difficulties of Parenting a Disabled Child

Ben and Emma 2016

My daughter was born with cancer.

Born with it. She didn’t smoke. She didn’t eat all the red meat. She didn’t do any of the things you can do to give yourself cancer: she was a fetus. All Emma had the audacity to do was survive.

You may have already heard the story: tumor bigger than her head. Crushed her trachea and esophagus. Required about 17 hours of surgery in two different hospitals on the day she was born. She shouldn’t have lived, by any measurable standards. She spent the next six months almost not living. But then she did, after a year in the hospital, dozens of surgeries – one of which stole her voice – and a permanent tracheostomy placement.

Kids like that don’t stay out of the hospital for too long.

The other day, I tried to count the number of lifetime hospitalizations she’s had. I couldn’t. I honestly don’t know, but it’s dozens. Nearly twenty in the past 18 months.

When you parent a child with these issues, you know you’re not destined for the jet-set, and that’s ok. I made my peace with that; the joy of Emma’s life is worth any number of other sacrifices. I don’t need to visit the Caribbean, or have a fancy car, or stylish clothes. I can get an extra year or two out of my glasses, and I can do without most anything.

But it shouldn’t have been as hard for us to just get by as it has been.

I knew the medical bills were going to be enormous. These are costs everyone knows are wild and out of control. Emma’s uncovered medical expenses just for her first year (which, by the way, would have been covered under Obamacare) were equivalent to a house in the Boston suburbs. Ten houses in Detroit. Those are the expenses you anticipate, and find ways to deal with.

What nobody knew beforehand, what nobody told us, was the lifetime expense we would have. Emma, if you are reading this THIS IS NOT YOUR FAULT. You did your job. You lived. You are worth every hardship a million times over, and the joys you have wrought in my life are not measurable in these terms. Or any. None of this is your fault, and even if it is (it isn’t), I would choose you over and over and over again.

America, this is your fault.

We’ve created a culture where an individual’s contribution to society is measured solely in dollars. Where we are so damn selfish with our tax money that we only want to pay for that which measurably benefits us directly. We have gutted our social safety nets because we’ve bought into the confirmation bias of “people who need help are lazy.” We’ve bought into the idea that the only thing you need to do to succeed financially is work hard.

We’ll here’s the reality of raising a disabled kid – especially as a single parent.

You’re going to lose jobs because you have to miss time for doctor’s appointments, sick kids, and hospitalizations. And because your sick kid raises everybody’s insurance premiums, even though that’s illegal.

When you lose those jobs, you are going to lose your insurance.

When you lose your insurance, you are going to take any other job you can get, and are going to be miserable.

When you lose your job, there is going to be very little help available to you.

Maybe you’ll get food stamps, and when you have to use them to feed yourself and your child some entitled jerk in the grocery store checkout line will yell at you. Almost every time.

You will feel invisible, except when you are not living up to the American Dream, and then you will feel like you live in a spotlight of dehumanization.

You’ll need to ask family and friends for help over and over again. If you are lucky (I am) you will be bowled over by their generosity. Lucky or not, however, you will lose or strain relationships and find judgement from people you thought would always be there for you no matter what.

When you take that terrible job, you’ll probably not be as good at it as you could have been because you’re not sleeping over the mounting bills and your sick child.

And then you’ll lose that job the next time your kid gets hospitalized, and start the cycle over again.

You will suffer from depression. This will exacerbate the cycle.

Sometimes, you’ll get a stretch of things going well. You’ll try and build a social life.

Maybe even go on a date or two.

And then people will leave you because even though you told them you have a sick kiddo, a kid who will and should demand more attention than the average kid, they don’t believe they reality of it. And once they experience it, they can’t in fact handle it.

And you’ll be pretty desperately lonely.

And it keeps repeating.

I’ve been luckier lately – the jobs I’ve done and which I hope to do are now in an area more compatible with an ability to work remotely. For thousands or more of us, this is not the case.

Its something we could fix so easily. We could value parenting over a few extra cents on our tax bills. We could say “as a society, we need to take care of each other.” We could see that providing for the welfare of those who really need it provides for the welfare of the entire community. That it makes us stronger. That we do have a responsibility to one another, those of us who share a nation and a heritage. Those of us who live in the bounty of the richest nation in the history of the world. We could raise up families who, but for the grace of whatever higher power in which you may believe, go the rest of you. We could see the EBT card in the checkout line, and instead of saying “I hate you,” we could say “I’m so sorry.” Or nothing. Nothing would be fine, too.

Because in one way or another, we all pay. And I assure you, there is nobody in my position who wouldn’t rather their child was healthy and that they could easily live the 9-5 American Dream.

She survived. And every day, we struggle to do the same.

On the Radio

Ben and Emma 2016

Occasionally, I am able to con the good folks at WBUR’s Cognoscenti to publish some of my drivel. Even more occasionally, I go in and record said drivel for the radio. This is, perhaps, one of the pieces of drivel of which I am most proud. In it, I recount an experience I recently had watching my daughter stop breathing following surgery. It was terrifying and monumental, and ultimately ok.

One of those pieces broadcast today. You can read it by clicking the link above or listen to an abridged version below.

Give it a listen, won’t you?