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.

Finding Space to Get It Wrong

Making room for making mistakes

There is no such thing as the perfect parent.

Those of us who write about our lives cannot help but put our best face forward. Even when we write honestly (and I always try and write as factually and as emotionally honestly as I am capable), this very fact becomes part of the image we put forth. When we write about parenting, we place our great mistakes in the role of life-lesson learned instead of some run-of-the-mill screwup we made because we were tired, or cranky, or just plain blew it.

Sometimes, many bloggers just make it up. The perfect marriage. The perfect kids. The lessons imparted from every venture to the top of some mountain, or to a volunteer cause.

Or from a brand everyone is just delighted and honored to work with.

Last week, Josi Denise called shenanigans, and while it rang a bit “Bye, Felicia,” she called us parenting bloggers out in a way we need to be called out. She admitted to faking it. She called out industry, and fellow bloggers. She pulled apart what used to be a writing venture and has turned into a cottage industry: the “mommy blog.” I don’t exempt us dads from it, either. We’re just not quite as marketable, except as morons who would rather let their babies sit in their own feces for three hours while the big game is on.

I don’t write “sponsored posts” (read: commercials) and I never, ever will. I abhor a branded “twitter party” (read: long-form audience participation ad – “Q1. How does being Zestfully Clean make you feel confident during those stressful mommy hours?”) and have muted or unfollowed every account I can find that participates them. I’m not sure I exactly fit into the culture Denise called out, but I’m not sure I don’t – and it got me thinking about the things about which I *don’t* want to blog.

Like the time I accidentally grabbed a poorly-labeled bottle of 1/2 strength hydrogen peroxide and used it to flush my then-toddler’s feeding tube instead of the nearby sterile water. Or the time the same tube got caught on the straps of her carseat as I was taking her out of the car, and I accidentally ripped it out. Or the time she told me she couldn’t breathe right, and I trusted the numbers on a machine instead of listening to her, and she ended up in the hospital with pneumonia.  Or the times early on in dating where I disappeared because I wasn’t interested or was too overwhelmed by life and just couldn’t date anymore. Or the times when I fell in love with women who were completely unavailable to me. Or the times after my divorce when I was so bad at dating I self-destructed good relationships. Or the times I couldn’t separate the enormity of dadding a special needs kid from the need to be good at work and instead of asking for help I just flailed poorly at everything.  Or the time I stayed with a woman who was entirely wrong for me because it felt preferable to being alone. Or the inability to invest in friendships the way they need to be nurtured because of a lack of emotional energy. Or the digitally-dusty half-memoir sitting in the cloud without progress. Or the bags of chips and extra tacos that gained back the weight I lost. Or any number of other daily disappointments we foist upon ourselves.

There are not lessons in these. There is no neat 500-word summation that leaves us with a greater understanding of the world at large. There isn’t a smile in the sudden ray of sunshine breaking through the clouds and illuminating the dust motes floating through the windows because I didn’t have enough energy left after doing everything else a single parent has to do and also to dust. They are just things that happen.

Sometimes, we just fuck up.

Maybe we should write that more often, instead of portraying everything as rosy or illuminating. Maybe we need to write all of reality. Maybe the flailing about for an anchor is the meaning. Maybe I wouldn’t be so worried about it if I was Zestfully clean.

Maybe we all need to give ourselves the space to make mistakes, and the freedom to leave them as what they are: transient, sometimes hurtful, and maybe even devoid of meaning. Even to our sponsors.

 

The Loneliest Number

Joy Division Love Will Tear Us Apart

A single father must hold two hearts.

The first heart, the dearest, perhaps, is the one wholly devoted to his child. This is the heart that wakes up in the middle of the night at the slightest cough. It is the heart that breaks for his sick child as he tries to sleep next to her in the hospital. It is this heart which is conditioned to protect his daughters above all else, and which his brain must check in order to allow her to blossom. This heart fills as the days pass, and aches as his daughter grows ever closer to growing away.

This is as it should be.

His second heart bleeds.

It is this heart he holds for himself, tentatively extending it to others in the hopes they will help heal old wounds. He retracts it when new pins are brought forth, only to be extended again when he thinks the recipient holds no pins. Some day, this heart hopes he is right. This is the heart we must hide from our children while it bleeds, and show as often as possible when it is whole and healthy and held.

It is not an easy balance.

When he dates, when he finds partners, before he can fully be with her she must know him a parent. And yet, as a parent, he does not want to involve her until he knows they are fully committed. It is a paradox I have yet to navigate successfully. I have a remarkable child I wish to share with just the right woman. For her to be just the right woman, she’ll have to love my daughter like her own – which risks pins in both of our hearts.

Hers has been stabbed more than once. Mine more than twice.

One of the difficult things when dating as a parent with a disabled child is that our lives are unpredictable. Things can be sailing along smoothly and suddenly we get two years of hospitalizations and stress. It can be hard to date us. It can be harder to love us. It takes a person of remarkable understanding and patience, a person with a boundless capacity for love. All too often, we discover too late that the person we suspected has these things does, in fact, not.

And so we retract our hearts. We mend. We fill our first heart with love, and we dine out for one.

And we tell ourselves it will be ok. Even when it doesn’t feel like it possibly can be. Even when love tears us apart. Again.

This blog is reborn. It will be an extension of that second heart to you, readers. It will document my attempts to extend it more personally to someone special, along with parenting, politics, prose, and products. Basically, whatever I feel like. Read if you like, but keep the pins at bay, won’t you?