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How my newborn has taught me to embrace my disability

My limitations are more apparent than ever, and it’s going to take embracing my vulnerability to be the best dad I can, writes Christopher Vaughan

Sunday 28 November 2021 00:01 GMT
<p>I returned to physical therapy to learn new skills such as nappy changing </p>

I returned to physical therapy to learn new skills such as nappy changing

Scrolling past dozens of baby carriers online, I couldn’t find one that would allow me to strap an infant to my chest using only one hand. In a few months, my wife, Lisa, would give birth to our first child, and I was searching for the perfect carrier to ease my anxiety as an expectant father with cerebral palsy.

I tried three carriers on display at the store, as well as a hand-me-down and another purchased online that looked like a tiny hammock. Fastening any of them with my left hand alone wasn’t an option – and one required tying multiple pieces of fabric together, which just seemed like a cruel joke. After returning them to the store, I finally admitted that Lisa would need to help me buckle our baby boy into a harness.

At 32, my CP was manageable most days. Even though my right foot can be spastic, I walk independently. My sister taught me how to lace my shoes when I was a preteen, and I learned how to drive with the help of adaptive equipment in my twenties. Still, I type with one hand.

Despite daily limitations, I’d spent years trying to forget I had a disability, neglecting to reveal my CP to some of my closest friends until recently for fear of judgment. It took me a month to even tell Lisa about it when we first started dating eight years ago.

After attempting to hide a curled and constantly clenched right hand for a majority of my life, I was now determined to fully embrace my disability throughout Lisa’s pregnancy. I returned to physical therapy for the first time since childhood to learn new skills, like using both hands to change a diaper so I would be physically prepared for my first child. It was also important to me to find acceptance in my disabled body, setting an example of self-love for my son, Noah.

Lisa finally found a BabyBjörn mini carrier a few months into our hunt, which my physical therapist and I assessed was optimal. The carrier had easy snaps, clips and minimal buckles that I was able to affix with one hand, however I’d still need some help securing it. I was planning to try out the new carrier, and other adaptive equipment, with Lisa’s assistance once our son arrived.

What I didn’t anticipate was just how challenging parenting as a disabled person would be even before my son came home. A harrowing delivery and an emergency following childbirth would mean that I had to care for Noah without Lisa’s help for the first two days of his life.

After a 40-hour labour – which included four hours of pushing and then an emergency cesarean section when Lisa’s doctor determined Noah was stuck – our baby came into the world healthy, with long, beautiful eyelashes – a fact the doctor shouted over the surgical curtain.

A few years ago, I finally stopped evading questions about my CP, simply saying that I have a disability when someone offered a handshake I couldn’t reciprocate

Lisa joked with the nurses as they took her vital signs in the recovery area while I tried using my right arm to boost our infant so his rosy cheeks would be visible to his mom lying down next to us. I was focused on keeping my arm steady because my CP makes my right side weak and spastic, so I didn’t notice more nurses beginning to flood the room.

Lisa was haemorrhaging. The nurses fretted as they attempted to stop the blood loss. I looked on helplessly, trying to calm Noah’s crying with his tiny body laying on my trembling right arm.

Lisa went back under anaesthesia so doctors could pinpoint the haemorrhage site and had an embolisation procedure to stop the bleeding. I was sent to the maternity floor with our son alone while Lisa went to the intensive care unit for monitoring. She would receive a total transfusion of six blood units and two units of plasma by the next morning.

Lisa’s doctors kept repeating that they were happy to see her alive once she was transferred to the maternity floor with us after two days in the ICU. In the meantime, Noah and I were on our own.

My mother-in-law joined us during visiting hours, helping me only when necessary and giving me space to reposition Noah when my right hand closed involuntarily. I’m sure the carrier would have also been useful, although I didn’t think to unpack it in between messy diaper changes.

In a hospital rocking chair, my right hand hung limp as I figured out how my disproportionately small forearm could keep Noah steady while I used my left hand to lift and feed him – I soon discovered that stacking pillows underneath my right elbow and leaning the baby into the crook of my arm was the way to go. The plastic packets containing his bottle tops could be opened with my teeth, and I learned to hold the bottle between my chin and neck while picking him up.

A few years ago, I finally stopped evading questions about my CP, simply saying that I have a disability when someone offered a handshake I couldn’t reciprocate. The maternity floor wasn’t a place to feel apprehensive speaking about my disability, so I announced to every nurse who came to check on Noah that I have CP.

My limitations are more apparent than ever, and it’s going to take vulnerability to parent as a disabled dad. I can often pass as non-disabled, and it is frustrating living in between what many see as normal and needing assistance. However, I found confidence in my ability to parent Noah and advocate for myself during our two days in that maternity room.

On a crisp Sunday a few weeks after Lisa was released from the hospital, she placed Noah inside the carrier, which was halfway strapped to my shoulder and chest. I used my right forearm like I had learned in the hospital to keep him in place while my left hand attached the top snaps. Meanwhile, Lisa worked to wiggle Noah’s chubby legs through tiny holes I couldn’t reach. Once she tightened a final band, we were ready to go.

Following some practice steps across the bedroom, Lisa and I took a long walk through our town as Noah slept inside the harness wrapped around my torso, safe and secure.

This article originally appeared in The New York Times

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