Hello, and welcome to my blog, Parenting on Wheels. My name is Patrick Bohn, I’m 34 years old, and I’m married to the most beautiful woman in the world, Ashley Bohn. We’ve been married since August 8, 2015, and we welcomed our first child, Cora, into the world on October 20, 2016.
At this point, none of this separates my blog from one of the millions that already exist no parenting. But, there’s something I left out: I was born with spastic quadriplegia cerebral palsy. In short, this is a neurological condition that affects all four of my limbs and makes my muscles tight. I’ve had this condition since birth, and it requires me to use a wheelchair (primarily) and walker (occasionally) to get around.
While I’m fully independent, my CP has certainly made my life challenging at times. Now that I’m about to embark upon the most challenging experience there is—parenthood—I thought it would be worthwhile to chronicle our family’s experience. There aren’t a lot of resources out there regarding being a parent with a disability, but there is a lot of misinformation. Hopefully, this blog will be a informative, interesting, and occasionally funny place for people—both disabled and non-disabled—to learn about the unique aspects of being a parent (and expecting parent) with a disability.
I hope you enjoy reading this as much as I’ll enjoy writing it. If you have any questions or comments, feel free to contact me at firstname.lastname@example.org
So, the Americans with Disabilities Act turns 27 this year. And that’s something worthy of celebrating. Now, before you point out that this might seem to be an odd thing to celebrate, let me quote a scene from the iconic television show Sports Night, where two characters are debating celebrating Bobby Thomson’s “Shot Heard Round the World”
JEREMY: It’s the 49th anniversary. DAN: And deserving of a tribute. JEREMY: A 49th anniversary tribute? DAN: What, there’s a law it’s got to come with 5s and 10s?
Dan, being the best character on the show, knows that we don’t just celebrate some anniversaries. We can celebrate all of them. Because, the ADA, while being far from a perfect law, has had a major impact on my life. Especially now that I’m a parent. For example:
This is me and Cora, riding on a carousel at a local park. Now, you should take a close look at this picture. Because if you do, you might notice that, oh yeah, there’s no ramp or handrails on this thing. The only reason I was able to climb up here with Cora is because I had my beautiful wife Ashley helping me get on while my brother held Cora.
This is the kind of stuff that made me—and still makes me—really nervous about parenting. It’s easy to be a good parent when I have my support system helping set me up for success. But there’s no way I could accomplish something like this if I was spending the day alone with Cora. That’s really sad to think about, actually. One-on-one bonding time is so critical, and the fact of the matter is, our society was not built by people who cared all that much about accessibility. As a result, there are a lot of places I can’t go, and a lot of experiences I can’t partake in, because they’re not accessible. The ADA, for all its flaws, tries to correct that as best it can.
If you’re still reading, a question might have popped into your head by now. You’re probably wondering why I picked something that’s not accessible to highlight the ADA, which is about making things accessible. Here’s the truth: It’s pretty easy for me to come up with examples of things the ADA makes easier for me as a parent. Curb cuts, ramps, elevators, parking spaces, the list goes on.
But I want you to take a look at this photo:
This is a group of people working to build a ramp to that same carousel you see above, thanks to groups like the Friends of Stewart Park and Play by Design. Now, this is not something that’s being done because of the ADA. It’s something that’s being done because a group of people got together, and decided “Hey, this thing that disabled people can’t partake in? They really should be able to do partake in it.”
As I said earlier, the ADA is not a perfect law. There are things about it I find counterproductive. But at its core, to me, the ADA isn’t just a law that says businesses must do X, or that the government will provide Y. It’s an idea. An idea that, just because you’re born disabled, you shouldn’t be unable to do basic things like get into a building, or use a bathroom in a restaurant. The spirit behind that idea is what causes people to decide “Hey, let’s make this thing accessible even though we don’t have to, so someone in a wheelchair can use it.”
That’s what we’re celebrating, and that’s what the ADA means to me (and Cora!)
Today is Father’s Day, which is something I’ve been looking forward to since well, 3:12 in the morning on October 20, when Cora was born. And of course, I’ve spent a lot of time with her already today, soaking up all the smiles and cuddles I can. So far, it’s been a great day, and it’s not even noon.
I’ve talked a lot in this space about how nervous I was to become a father. But I haven’t talked enough about the reason I was confident that I was going to be a great one. And that reason is simple: For the first 33 years of my life, I had an apprenticeship in fatherhood at Tom Bohn, Incorporated. And when you learn from the master, you pick up a few things.
My father was, without a doubt, the best father you could ask for. Want proof? I’m going to show you a picture, which won’t seem like much at first. But from this picture, you’re going to learn why my father is the greatest man I’ve ever met, and the reason I’m the father I am.
There it is. Now, I know what you’re thinking: This was just another excuse for me to post a picture of Bomber football. Fair point. But it’s so much more than that. Let’s break down why this photo proves my dad is the best.
He passes on his passions: As hard as it is to believe, I was not born a Bombers fan. It’s something I inherited from my father, who started taking me to games at Butterfield in 1988 (a magical year in Bombers history), when I was only five years old.
He took me to nearly every home game from kindergarten to college, and we still go to games today. Sitting next to my Dad as we watched the Bombers has always been one of my fondest childhood memories. And this fall, I’m going to pass on the passion to Cora, just like he passed it on to me.
He’s always wants the best for his children, and he’ll do whatever it takes to make that happen: As you can see in this picture, my father and I are sitting at the top of the stands at Butterfield Stadium, which is a view second to none in college football. And as I’ve alluded to, although I love Butterfield, it straddles the line between mostly inaccessible and completely inaccessible, mostly due to the lack of handrails in the bleachers.
But my father would be dammed if that meant we weren’t going to get the best seats in the house. He’d always take my arm and let me lean on him so I could sit wherever I wanted. Forget the bottom row. And the weather wasn’t always as amazing as it was in this picture. He’d walk me up those bleachers in a snowstorm, just because I begged him to let me sit near the pep band. (Which was awesome. Thanks Dad!).
Now that I’m a father, I know I’m going to do everything I can to make sure Cora has the things she wants (Well, except for a pony. Those are expensive, honey.)
He always pushed me: Even though it would have been easier (and in retrospect, safer) to sit somewhere else, my father knew that, in addition to providing a better view, getting to the top of the bleachers would require me to well, walk to the top of the bleachers. And that’s no easy task for someone with Cerebral Palsy. But my Dad never let me use my disability as an excuse not to do something. He knew that all the effort I put in was going to pay off in the long run. If I wanted to sit up with the band, or the very top row, I was going to have to work for it. Not only did that lead to that great picture you see, it’s carried over into everything I do, and it’s made me a better father.
He always puts his family first: My dad likes going to Bombers games, don’t get me wrong. But I loved going to Bombers games. In fact, it was probably my favorite thing to do in the world. I’m sure there were Saturdays when my Dad was tired, or busy, or not feeling well, and he just wanted to stay home. But he never once told me we couldn’t go to a game if I asked. Because not only did he want me to have a great day, he wanted to spend time with me.
I think that’s the biggest thing he’s passed on to me. I can’t tell you how many times I’ve declined to go somewhere with friends because I was planning on having family time. As my DVR can attest, I watch a fraction of the TV I used to, because I’m too busy trying to teach Cora how to eat puffs, or playing airplane, or singing songs. Spending time with her is the best part of my day, and I owe a lot of that to the fact that my Dad always made it clear that spending time with his children was the best part of his.
So on this, my first Father’s Day, I’m thankful not only for the beautiful family I have, but for the man who taught me how to be a father.
Being a parent with a disability comes with its fair share of challenges, one of which is people frequently assuming what I am capable of. I’ve been disabled since birth so you can imagine what 35 years of assumptions look like but as a parent, it strikes a different chord. Whether it be people assuming I am not the father, that we had to go through fertility treatments, that I can’t take care of our baby, or many other things, it doesn’t feel good and shouldn’t happen.
Once, when Ashley and I took Cora to the ER, one of the staff members asked Ashley who Cora’s father was…as I was sitting right next to her, as I had been for 45 minutes. As Cora grows and begins to understand more about the world and what people are saying, I can’t help but worry about how we will handle it all.
I want to talk about something that happened to Ashley and me a few weeks ago. Something that has probably happened to a lot of parents with disabilities. Something that really shouldn’t be taking place in 2017.
It was a Sunday. Ashley was with Cora, shopping in town. Normally, you have to tear me away from my wife and baby girl on a weekend, but on this particular Sunday, I was working, because it was Ithaca College’s Commencement, and in my office, that means it’s all hands on deck.
After I was finished for the day, I drove to meet my girls and met them in the parking lot of one of Ithaca’s fine stores. It was then that Ashley told me what had happened just a few minutes earlier. Someone in the store, who had known me for a long time, and who recognized Ashley and Cora from the hundreds of photos I post of them went up to them to say hello.
The conversation started normally. Pleasantries. Compliments. Then, this person turned to Cora and said the following:
“And you must be the miracle baby!”
Now, in a former life, I was a professor. So, before we continue, let’s pause for a lesson. If you know me, and you’ve read this blog, you know two of my favorite things in the world (besides Ashley, Cora, and Banjo) are Ithaca College Football and Julio Jones. So I’m going to use those two things to teach you about miracles using two videos.
In the final seconds on the 2014 Cortaca Jug, the annual rivalry game between Ithaca and Cortland State, Ithaca was clinging to a three-point lead. Cortland was out of timeouts, so they had to rush their field goal unit on to the field.
There was chaos. There was confusion. There were people frantically running everywhere. There was a fumble. In short, lots of stuff went wrong for Cortland on this play. But somehow, despite all this, the Red Dragons turned disaster into triumph, and a game-winning touchdown. That is a miracle (or a nightmare, if you’re a Bombers fan).
In the second half of the 2016 NFC Championship Game, the Atlanta Falcons had the Green Bay Packers on the ropes. They were up 24-0 when league MVP Matt Ryan dropped back to pass. He threw to Julio Jones. This was the result. That, dear readers, is not a miracle. That’s someone combining size, strength, and speed to achieve a goal. In a word, that is awesome.
When my wife heard this person call Cora a miracle baby she was nearly speechless. Sure, there were a lot of moving parts to the whole thing, but the end result didn’t surprise us any more than Julio surprised the 74,000 people in the Georgia Dome.
It gets worse. Rather than just politely walking away, this person then asked my wife if we were afraid of passing my Cerebral Palsy on to Cora.
My wife, to her credit, handled this second question with a lot of grace. She politely explained that CP isn’t hereditary, and that it had never crossed our minds about Cora having a disability.
Look, I understand there’s a lot of things that people don’t understand about disability. This makes sense. Disability is complicated. Heck, there are things I don’t understand about my disability. But one of the things that disabled parents face is the misconception of others, that we’re somehow less able to be parents, or that everything relating to parenthood is a struggle for us.
And don’t get me wrong. There are certain things that are a struggle. There are legitimate fears I had before Cora was born. But these comments struck a nerve with me and my wife. This was 2017. Al Gore invented the Internet like, 25 years ago. How could this person have such a lack of understanding about, not just how disability works, but also what’s are acceptable questions to ask about people with disabilities.
A quick primer: No, CP is not hereditary. And don’t ever call a disabled person’s baby a miracle baby (unless they’ve given you some prior indication that it’s okay to do so.)
Much like anyone else in the world, we are all different and have different capabilities. You can’t and shouldn’t assume that because someone has a disability, that they are infertile, unable to conceive a child, unable to live independently, unhappy, uneducated, or anything else for that matter. I could write about book about the assumptions that have been thrust upon myself personally. (For the record, I can walk, talk, I’m educated, I am married, independent, happy, successful, employed, hilarious, good looking, incredibly humble… the list goes on and on.)
I started this blog to educate people about the major challenges of being a parent with a disability. But I also started it to share my personal thoughts, feelings, and emotions about being a parent.
And the words of this person have stuck with me for weeks. Thankfully, Cora is too young to understand what people are saying. She also has no idea that I’m disabled. To her, all daddies have wheels.
One day, that’s going to change. Cora’s going to hear the things people say, and we’re going to have to have difficult conversations with her. I have no idea how those conversations are going to go.
But I do know that Ashley and I don’t ever want Cora to think that she’s somehow different just because her daddy uses a wheelchair. We want her to know that, from the second we decided we wanted to have a child, we never doubted it was going to happen, and that our child would be amazing. And my CP wasn’t going to stop that.
A few weeks ago, my amazing wife Ashley told me that our nanny needed to take her son to the doctor in the morning. And because Ashley had a meeting of her own that morning, she was going to be unable to stay home with Cora until our nanny was able to get her a few hours later. For those of you scoring at home, that meant the job of watching Cora fell to me, and me alone.
Like many new parents, the thought of being left home alone with my daughter was equal parts exciting and terrifying. I knew it was an incredible opportunity to bond, and that can’t be understated. But, like Homer Simpson in the simulator, there existed a moment of terror where I imagined being completely overwhelmed and causing a disaster.
This latter feeling was magnified by the fact that one of the initial challenges of being a parent with a disability, for me at least, was adjusting to things on the fly. Similar to Ron Burgundy reading the teleprompter, I was pretty good at what I was doing if I knew exactly what I needed to do at that moment, and the next. But adapting quickly was a challenge.
This is why Ashley, and I often talked about “setting me up for success” when it came to watching Cora. Essentially, this meant planning out whatever task I needed to do. If I was going to feed her, we needed to make sure I was sitting in the right position, with my arms supported properly, and Cora’s after-dinner pacifier ready to go.
The photo on the left is an example of what I’m talking about. Sure, I look like I’ve got everything under control, but see the chair I’m in? The pillows behind my head and under my arm? Those are not there by accident. It took a lot of prep work to pull this off.
The thing you don’t see is that after this photo was taken, I had to hand Cora to Ashley to get out of the chair and into my wheelchair before I could do anything else. This was a luxury I wasn’t going to have on this upcoming solo jaunt.
Don’t get me wrong, we still did prep work for that morning. Before my wife left that morning, we took Cora’s Pack and Play out of our room and put it in the living room—I can’t do things while holding her, so I need a place to put her while I pick up bottles, books, or what have you. We also made sure to have water and formula ready to be mixed.
I was feeling confident, Cora was on a pretty reliable schedule at this point. I figured I’d feed her just before my wife left—thus allowing her to help me if needed. Not long after, Cora would probably fall asleep. Also, she’d been pretty constipated* for the last day or two, so I doubted I’d deal with a really messy diaper. Like the Falcons at halftime of the Super Bowl, I was set up for success.
*Dear Cora. If you’re reading this, I’m not trying to embarrass you. But the people have a right to know.
Well, if you’re a parent (or a football fan), you know what happened. Cora took the plan and laughed at it. First, she was apparently not in the mood for an early morning breakfast, so after trying in vain to feed her, I bid goodbye to my wife with a kiss and put the bottle away for future use.
Of course, now, Cora did not need to sleep off her milk bender. And my daughter, above all things is a morning person. So we spent the next hour playing airplane, reading books, and singing songs. The book reading in particular was a new challenge.
Normally, when I read Cora a story, my wife holds her while I hold the book, sort of like how you see on the right. But, like Michael Bay following his split from Jerry Bruckheimer, I was flying solo, so I needed a new plan. After some tinkering, I came up with a solution. While in my wheelchair, I balanced Cora on one leg while holding her with my good arm. My bad arm held the book and tried to turn the pages.
It went pretty well, I guess. Sure, we skipped a few pages of The Little Girl Who Lost Her Name and the narrative may have become a bit disjointed. Whatever. Cora still loved it, and it was still better than Infinite Jest. More importantly, I read a book to my daughter by myself.
You may be asking: “Patrick, why didn’t you put her in a bouncer to read to her?” I’ll tell you why, anonymous reader. Because in our house, story time is also cuddle time. And we don’t half-ass story time. But also, because it was important for me to know I could read to her on my own terms. Don’t get me wrong, if I felt it was unsafe, I would have stopped. But I needed to know that I could read to Cora regardless of whether or not I’d been set up.
After story time, Cora got a little fussy, which could only mean one thing. It was time for breakfast! And for challenge number two. In my wheelchair, I placed Cora in her swing, and readied the bottle, putting it in arms’ reach on our kitchen table. I picked her up from her swing and carefully positioned her in my good arm. With her secure, I carefully reached out and grabbed the bottle.
Success! I slightly repositioned Cora, and she started taking that bottle down like I attack an Ithaca Root Beer. I had now read to her and fed her on my own, and in a way that I never had before. She was happy, I was feeling confident. Suddenly Cora began making strange sounds. And then, it hit me. Yes, Cora had picked that moment to poop. It was now officially the third act of Bad Boys II.
I started to worry. Changing Cora can be tricky, because she really likes getting changed. As a result, she kicks her feet with happiness. What if her feet landed in poop? And then she grabbed her foot? And then touched some other body part? There’d be poop everywhere! I couldn’t give her a bath on my own. Would I be able to pull this off or would this become “Naked and Screaming, the sequel”?
Then I remembered what Ashley always says. Cora will pick up on our mood. If I became stressed, she’d be stressed. If I was happy, she’d be happy. I’m not going to lie to you, I was feeling stressed. Sometimes, I really hate being disabled. Not for me so much, but for Cora. I didn’t want to let her down. Even though she’ll never remember this, I wanted to be a success for her. I didn’t want my first solo dad run to be a failure. But to succeed, I needed to be in the right mindset.
So, I calmed myself down. I took a deep breath (through my mouth), tossed the bottle on the table, rebalanced Cora on my lap, slowly wheeled her over to the couch, and started the dirty work. Cora and I laughed. We sang along to 70’s rock. It was great.
Thanks to my wife’s advice, and with an assist from Steely Dan, I got her into a clean diaper and buttoned up. We were in the clear!
At this point, Cora was all tuckered out from reading, eating, and pooping (to be fair, that tires me out too). So I laid her in her swing, with a woobie, blanket, and her monkey Henrik, and she fell asleep until the nanny came.
Look, what I’ve just described to you is a pretty standard morning for any stay at home parent. But this was such a big deal to me, I cried after the nanny left.I called to brag to my wife after doing something she had done dozens of times. Because this time, for me, taking care of Cora didn’t involve help from others, and a perfect set up. This time, I was forced to make a go of it on my own. To improvise. It was hard. It was scary. And it worked. Cora and I had a great time, and it was one of the best mornings of my life.
That’s when I realized something: Even though being disabled comes with a lot of challenges, and even though my wife and I plan ways around those challenges, often to great success, I don’t need to map everything out to be a successful parent. Like Matt Ryan at the line of scrimmage, I can audible to a new play based on what I see from the defense. This one morning alone with my daughter made me feel like I could accomplish anything as a parent, regardless of my disability. And there’s no greater feeling than that.
If you’re following this blog, you know that my family and I live in Upstate New York. There are some great things about living here, we have great chicken wings and there’s some good D-III football.
On the other hand, we get snow. A lot of snow. Wikipedia says we get about 10 feet a year on average, and there are times where we get pounded. Over the past two days, we’ve been nailed with about a foot and a half of the stuff. It got so bad they closed the college for two days (2nd time since 1993!)
Now, snow isn’t all bad. The inner kid in me loves snow, and snow days. Plus, the piles of snow in our apartment complex are so high right now, Ashley has spent a lot of time playing Top of the Mountain, which makes for great pictures.
Here’s the thing though: When you’re in a wheelchair, snow sucks. There’s no other way to say it. Anything more than a few inches overwhelms the small front wheels, and the snow sticks to the bigger ones, making pushing a choice between two awful options:
Using winter gloves and not getting a good grip on the wheels; or
Using wheelchair gloves (not even a real thing, usually its bicycle gloves or kayaking gloves), getting them soaked, and freezing your hands
Plus, for people like me who stow their wheelchair in the back of their cars and walk to the front of them to drive, snow (and ice) makes that more difficult as well. My balance is lousy in the best of circumstances. Miserable winter conditions make all of this a non-starter.
Compounding the issue further is that, while I can work a shovel, I can’t dig out of a blizzard. I’m capable. I’m not Mr. Plow. (To be fair, who is?)
When I was single—the Dark Ages, according to Ashley—this wasn’t that big of a deal. If a snowstorm was imminent, I’d make sure to get a stockpile of wings delivered ahead of time, work from home, and call my landlord. He was a really helpful guy who would always shovel me out once the worst had passed.
Now that I’m a father though, this hunker down mentality isn’t going to always be an option. This past Saturday, my parents were over, and they noticed Cora was tugging at her ear. Uh-oh. Cora had just gotten over a cold, and everything we read said ear infections were common after a cold.
We took Cora to the pediatrician’s office first thing Monday, where they confirmed our fears. She had an ear infection. Thankfully, we were able to get to the pharmacy and pick up her medication before the storm hit, and she’s on the mend, and generally in good spirits.
I’m going to be honest though: This whole experience caused me to do a lot of thinking. Like all parents, the health and safety of my child is my absolute, number one priority. But as I started thinking about everything that had gone on over the last few days, I asked myself: What if I was alone with Cora and needed to get her somewhere in an emergency in the winter? Even if we’re not talking a blizzard, I’d struggle to get her to the car by myself.
Obviously, the answer is that I’d call an ambulance, or friends and family for help. Still, it kind of drove home a central point for me: Even though I’d do anything for my daughter (except root for Cortland), there’s some things that I just can’t do, realistically, because of my disability. Dealing with snow is one of them.
This isn’t just going to manifest itself in an emergency, either. I’m not sure if I’ll be able to manage the snow in good times. Could I take Cora sledding on my own? What if she wanted to downtown for a kids event? Or go for a walk?
These are the thoughts that give me a lot of self-doubt as a disabled father. I want to believe I can do anything. More importantly, I want Cora to know that. The thought of disappointing Cora because I can’t do something makes me incredibly sad. I think so much of the culture of disability is centered on overcoming obstacles that we don’t really talk about the fact that some things can’t be overcome in a satisfactory way. I know there are solutions for getting around in the snow, but the reality is, for me and my specific disability, the winters are always going to be a struggle.
Ashley and I often talk about setting ourselves up for success as parents. What this means, is making sure we have the tools in place to handle any crisis that may come up. When it comes to winter however, one of the things that Ashley and I have realized, is that the solution may be to avoid the crisis all together. As our family grows, challenges like these are only going to become more magnified. Moving to another state with warmer weather would eliminate a lot of the winter woes and essentially give me year round independence. While I would miss Butterfield and ICO, I hear other states have pretty good things too ( Roanoke Weiner Stand and Primo Hoagies !) But for now, we are still in upstate NY which means, winter issues are still in play.
It’s at times like these, that I’m reminded that this blog is called “Parenting on Wheels” and not “Daddying on Wheels.” Before Cora was even born, Ashley and I would talk about these types of things. And whenever I would feel that self-doubt, Ashley would remind me that we’re a team, and that we both have our strengths. Winters are where Ashley’s strength comes through. She makes sure we’re shoveled out, and that our cars are cleaned off, and that I can get into the car safely.
This is a pretty comforting thought. Sometimes, when you’re disabled, the hardest thing to do is to admit that you can’t do everything, and you need help. And that goes double for when you’re a parent and taking care of an infant. Because of my amazing wife, parenting in the winter is a lot less scary.
Finding out I was going to be a father was, one of the greatest moments of my life. If you’re a parent, you probably recall how it felt: There was a tremendous sense of happiness, love, and pride.
Not too long after that initial euphoria faded though, it got replaced by something else. Not worry, necessarily. But suddenly, I felt like Homer Simpson, realizing he had a million things to do all at once. In nine months, there was going to be a baby in our apartment. And babies need (a lot) of stuff.
One of the biggest things they need is a crib. Not only is it the focal point (warning: language) of the nursery, but a place to sleep is a pretty important check mark on the list.
Here’s the problem: For nearly all parents, getting a crib involves setting a budget, deciding on a style, and picking out a crib. But when you’re in a wheelchair, cribs are a lot more complicated. Whereas an able-bodied person can just lean over the sides of a standard crib and pick up or put down a baby, that’s not possible for me. I can stand, but my CP means I don’t have the balance or arm strength to stand while holding a baby.
When it comes to being a parent, it’s really important to me that I balance as much of the responsibilities as possible. The inability to do something as simple (and critical) as putting my baby down to sleep would throw a dent into that plan.
My first task as a father-to-be came into focus: Figure out the crib situation.
This turned out to be a lot harder than I thought it would be. Mainly because, due to our family’s love of Will Ferrell movies, I assumed that cribs where the sides dropped down—thus giving me easy access to the not-yet named baby Cora—were still a thing. Turns out, they’re not. Now, that doesn’t mean there aren’t still those types of cribs out there in the world. But if even the new ones were considered unsafe, Ashley and I certainly didn’t want an older, used one. A buddy of mine remembered that hospitals do use cribs where the sides can be lowered, but those companies don’t sell to individuals. So that plan was out.
Our next thought was to turn to the Internet. As my wife was fond of saying, I was not the first person in a wheelchair to have a child. Someone, somewhere had to have a solution. The problem is, most of the people who come up with these solutions for disabled individuals aren’t forming companies and creating scalable solutions for society. They’re solving one person’s problem.
And it didn’t take us too long to find what we thought was a solution. PediaLift’s crib seemed to be exactly what we were looking for. It addressed our needs, and we felt safer that it was an actual company.
The problem? This was the only such company we found, and when we reached out to them, we were quoted a cost of more than $16,000. That number is slightly less than what we wound up paying for a nearly new van four months later. And while we toyed with the idea of letting Cora live there, we were worried about her going on a joy ride across state lines.
This is actually a really common thing to encounter when you’re disabled. So many of your solutions for daily living, aren’t as much “solutions” as they are “really expensive things you might not be able to afford.” And there wasn’t much point in going broke to buy a crib and then having to live on Government cheese. So plan B was out.
It was at this point that we realized we’d need go the DIY route with this crib. Well, not the “Y” because neither my wife or I had the ability to make the type of crib we need. We both majored in Communications, for crying out loud. Thankfully, upstate New York is home to lots of colleges where there are people who major in things that could actually help us. Like engineering. In a bold move, I decided to email several of these schools, out of the blue, to see if they knew of anyone who could help us build the crib we needed.
Lo and behold, it actually worked. One of the schools got back to us, and put us in touch with a pair of really nice professors who seemed more than willing to help us modify a store-bought crib to make it accessible for me. Over the next several months, we emailed them about our needs and they shared ideas. They came to our apartment to take some measurements and sketch stuff up. We bought the crib we were going to have them modify, and had it sent to their campus.
Then, one day, we got an email from them. An email that mentioned lawyers. Right away, I knew this was not good news. It turns out, these professors wouldn’t be able help us after all. It was a safety and liability issue—which I guess isn’t too surprising, given that, as I mentioned, a previous accessible crib solution was deemed unsafe by the government.
Still, at this point, Cora was only a few months away. And I was beyond frustrated. I was angry. It’s hard being a parent, but it’s really hard when you’re disabled and you’re trying to do something as basic as get a crib for your daughter, and everywhere you go, you get turned away. I just want to take care of my daughter. This was 2016. We’d put a man on the moon. How is it possible that we didn’t have a realistic way for a parent in a wheelchair to use a crib?
After reading that email, I called Ashley. I yelled. I cried. My wife, being the amazing person she is, took me out for a big steak and promised everything would be okay. She told me that lots of babies can sleep in a rock ‘n play, or a pack n’play, for months, and we had plenty of time to find a solution to our crib problem.
As it turns out, she was right. One day, Ashley was talking to her father, and she mentioned the problem we’d had with the crib. My father-in-law, Jim, is a real do-it-yourself type guy, and he promised us he’d come up with a solution.
When he came to visit us that summer, he had one. Contrary to my plans that involved engineers and taking out a five-figure loan, Jim’s solution simply involved a miter saw and about 20 bucks spent at Home Depot. He was going to put a french door on Cora’s crib, with a deadbolt lock.
Turns out, just like that Luvs commercial, like all first-time parents, I was way more nervous than I had to be. Even though it seemed like we were going to be thwarted at every turn, in reality, we have so many great people in our lives, a solution was never far away.
Still, this experience was really eye-opening for me, and if you’ve read this whole thing, I hope it’s been for you. We’ve come a long way when it comes to services for the disabled. But there’s a lot of gaps that remain out there, and a lot of them have to do with parenting.
So if you’re disabled and you’re reading this, I want you to know that, even though it can be frustrating at times, there are solutions out there. And if you’re able-bodied, I want you to think about all the things you might take for granted when it comes to being a parent, and realize there’s a whole population out there who could use a helping hand when it comes to that stuff. And if we work together, we can come up with solutions that make this parenting thing a little less scary for all of us. (Thanks again, Jim!)
This is what Cora and I did after I got home from work the other night.
I’m sure you’re thinking to yourself: That doesn’t seem like that big a deal. My kids liked it too.
Fair point. But to me, this was a really big deal. In fact, it was a huge deal. Why? Well, when you’re disabled, a lot of your life gets couched in terms of what you can’t do. That’s not meant to be a depressing anecdote, it’s just the reality of the situation. Cerebral Palsy, which is my disability, it sort of unique in that it can affect pretty much whatever it wants. So a lot of my life has been spent figuring out things I can do and things I can’t.
As I may have mentioned, my type of CP is called spastic quadriplegia, which means, essentially, that the muscles in all four of my limbs suffer from tightness.
Now I’m pretty lucky, all things considered. I’m not equally affected in all four limbs. My arms are much better off than my legs, and my left arm is hardly affected at all. Which, as you can see comes in handy when there’s a gallon of Ithaca Root Beer to drink.
Here’s the thing though: Some things are easier to hold than others. Growlers of frosty cold root beer, while heavy, do not move, which makes them pretty easy for me to hold, despite the CP impacting my gross and fine motor skills.
Babies? They move, and they don’t understand concepts like “Cora, don’t squirm, Daddy doesn’t want to drop you.”
Let me back up for a second. Before Cora was born, Ashley and I had a lot of conversations about our impending parenthood. Communication is one of the most important things you can have in any relationship, whether one of you is disabled or not. But it was especially true in our case. Like all parents, we were going to have to learn on the fly, but we wanted to make sure we were on the same page, so to speak. So we talked about everything. Hopes, dreams, goals, and challenges. One of the strongest aspects of our parenting is our ability to communicate.
One night, I told Ashley one of my biggest fears. I knew that I could teach her lots of things, from the greatness of Josh Felicetti and other Bomber football legends, to the
magic of Roadhouse, to a love of printed books. But what if I couldn’t play with her? What if my spasticity made it hard to lift her, or swing her, or bounce her?
Here’s the thing: I’m okay with the fact that I can’t do certain things. It’s not that I’m unmotivated; it’s just the reality I face. And I believe that life’s too short to be bummed about things like that. One day, Ashley and I went with two of my nephews to a town fair. This wasn’t Disney, with special lines and helpers at rides. This was a small town fair, and there was no way I was going to get on some of these rides. So I hung out while Ashley went on a roller coaster with one of my nephews. It was fine.
And one day, we’re going to have a talk with Cora about my disability, and what it means, and how there might be some things Daddy can’t do. (Not a lot of things, mind you. I’m disabled, but I’m still pretty amazing.) My daughter’s already pretty smart, so I’m confident that she’ll understand things.
But that’s for a few years down the line. I didn’t want to deal with that right away. I wanted to make Cora happy all the time. And I was scared I wouldn’t be able to.
Ashley, being the amazing wife she is, assured me that I’d be able to play with Cora. But there was always a little nagging worry in my head. What if I can’t?
So every time I try something new with Cora, I’m facing that fear. It’s tough, because like all parents, I want to be the superhero who can do everything. Unlike all parents, I worry that the things I can’t do will be the simplest things. I’m going to be honest with you: the first time I tried to lift Cora up over my head, I was scared. Was this going to be the first of the things I can’t do?
Cora’s only three and a half months old. She doesn’t understand that I’m in a wheelchair, and that my right hand isn’t very strong. She certainly doesn’t know what spastic quadriplegia cerebral palsy is. Her world is pretty simple. There are things she likes (baths, diaper changes on the sectional, early mornings) and things she doesn’t (being interrupted while eating, staying up past 7:00 at night, Cortland State).
And last week, she found something else she liked. Playing airplane. With her Daddy.