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(disabled) Dad Life

I’ve been telling dad jokes for as long as I can remember. But I’ve only been sporting the dad bod for just under 2 ½ years. My role as the resident patriarch is pretty unique considering that I’m typing this with my eyes and am relying on a ventilator to stay alive. But, really, other than that just your run of the mill daddy-o! (dad joke # 1)

I should note that I am not on a ventilator because of the pandemic. I was doing the vent thing before it became so mainstream. I have relied on a ventilator to breathe since I went into respiratory failure in August of 2017, due to ALS or Lou Gehrig’s disease. I had been living with ALS for five years at the time. I had only been married for six months and my wife was about seven months pregnant too. If you’re trying to do the math in your head, we hope our daughter is bad at math too! (dad joke # 2)

I made the choice to get a tracheotomy and live on a vent for the rest of my life. I am probably closer to Iron Man than any other fictional dad. I have the before mentioned vent, a 300 pound power wheelchair, a Microsoft Surface Pro tablet with eye gaze technology to communicate, and I eat through a tube. And on top of all those goods, I have a beautiful daughter, Elliott Monroe.

My role as a dad would not be possible, without my amazing wife, Shaina. Obviously, that is true from a literal sense, as every male mammal needs a female to father an offspring. But ask any single mom, a father and a dad are not the same!

Shaina helps me as much as she can, to be a dad. I get Elliott right next to me after she gets up every morning. I’m still in bed, Shaina is an early riser, which means like every married couple in the history of the world, I am a night owl.

She pulls back my right arm, that is in the exact same place it has been for the last seven hours, and nestles Elliott against my chest. It is the closest I will be to her all day. It’s obviously my favorite part of the day. Or at least a close second behind the first jolt of coffee the moment it flies through my feeding tube and cascades into my stomach like a scene from “Blue Lagoon”. (dad joke # 3)

Elliott is a super independent and strong willed kid. It’s been a fairly mind-blowing experience to watch her grow and develop skills, that I myself cannot do! This list covers everything from walking and talking to swiping her little finger on a tablet and feeding herself. She knows my voice as her dad’s and not as William, the preset voice from my type to talk eye gaze software.

I’m fully aware that from a basic living standpoint, she doesn’t need me, at this age. That is a tough pill to swallow, especially for someone with ALS, hahaha. Get it? I can’t swallow?!

As Elliott grows up and becomes more commutative, our relationship will rapidly change and deepen. As it stands right now, I am kinda parenting from a distance. This, despite always being in the same room with my wife as she does everything. As unique or difficult as it sounds, it’s been the most important role I have ever played.

The only time this relationship is gut-wrenchingly devastating is the moment Elliott falls or hurts herself. This is something toddlers do with great regularity.. I have watched the tears form, her face redden, and her sprint by my chair and look for her mom. It only lasts a few minutes, but not being able to scoop her up and soothe her,,comfort her, is the worst part of my day.

I think that this type of living or existence would kill most people. Fortunately for Elliott, her dad is not most people! Until she’s a little older, the morning cuddle sessions and the occasional wheelchair ride on dad’s lap will have to do for now. I could not be more thankful for my beautiful wife. She is a rock star and the ultimate role model for Elliott. I couldn’t be happier riding shotgun with these two Swans!

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