Reflecting on My First Month as a Disabled Dad, Part 3

Mini-Series Description

It is so hard to believe that it has already been one month since Kass and I welcomed our twin boys to this world. It’s even harder to believe that, if Kass had gone to full term, these boys would still be sitting comfortably in her womb. July 4th marked month one spent with these incredible little guys, and what a month it has been! This will be a 3 part blog series where I reflect on early life with twin boys and a disability.

Part 3: Days 12-30

Kass and I stood there for probably half an hour, in awe that we were finally home with our newborns. They had slept during the short car ride home and were still zonked-out in their car seat seats, so Kass carefully picked each boy up and placed them side-by-side in the twin bassinet. Kass and I looked at each other and I stated “wow, we really made some cute kids.” We seized the opportunity to get a bit more situated in the house. I set the air conditioner to 73°, trying to mimic the conditions they were used to in the Special Care Nursery, while Kass organized bottle parts and warmed their next feed.

When we went to the hospital that morning, we had no idea we would be bringing the boys home. It is generally a rarity that twins go home on the same day during a NICU stay. Both boys had also had circumcisions that morning, so it seemed outside the realm of possibility that they would be cleared just a few hours later. Kass and I were so eager to bring our twins home that we hadn’t even stopped to consider that fact that we had little idea how well they slept at night, or weighed that they might be extra fussy because of their surgeries. As Brody opened his eyes and immediately emptied his lungs, I realized Kass and I were in for a crash course on sleep deprivation. The witching hour had begun.

As both boys screamed in sequence, I received a warning on my Apple Watch that the current decibel levels were unsafe for prolonged exposure, as if my tech was mocking me as I fumbled through triaging the discomfort. I thought “start with the most obvious: food.” Kass took the bottles out of the warmer as I performed a smell check on the boys’ diapers, which were thankfully clean. This was the first time that Kass would have to feed both boys simultaneously—we didn’t have the extra set of hands from the nurses. Kass cradled Brody in an elevated side lying position and began to bottle feed him. He quickly settled, but it did little to assuage Bennett, who was turning red with impatient screams. I tried to rationalize with him from outside of his bassinet, but everyone knows you can’t bargain with an uncomfortable baby. As Bennett ignored my pleads of “calm down dude, you’re up next,” I thought to myself “how is Kass going to calm, feed, and burp two babies at the same time?” That’s when Kass scooped Bennet up like a loose football, cradled him with her other arm, and rocked him into a sudden calm, all while feeding Brody the remainder of his meal, telling me to “be quiet” after reminding her that she wasn’t supposed to be lifting more than 10 pounds.

As Brody filled up on milk, he grew uncomfortably rife with gas and began to yell, prompting his hungry brother to again do the same. Kass now had to choose between burping Brody or feeding Bennett, all while I sat there, trying to figure out literally any way I could help. She placed both boys gently onto the Twin Z pillow and strapped the nursing pillow—which I had been using to safely hold the boys—securely around my waist and backrest. Then I received a very grumpy Brody, placed flat on his back with his head in the nook of my elbow. It wasn’t exactly a position conducive to burping, but it’s what I could safely manage with my paralyzed upper body. I tried explaining this to Brody between screams, but once again: you can’t bargain with an uncomfortable baby.

Eventually, both boys were fed and burped. We tried putting them upright in their bouncer-swings, only to discover that they were too small to fit—a trend that we were finding with all of our baby must-haves. We had spent months and months prepping the house for every possible scenario, only to have a majority of the equipment remain unusable for the time being. That meant either being held, or lying flat in their bassinets again. We opted for the latter, after all, that was how they spent a majority of their time in the Special Care Nursery. The chorus of yells immediately resumed. “Okay, Okay, we’ll try holding,” as the screaming intensified.

We rattled off everything we could think of—diapers, surgical sites, gas, temperature, swaddles, cuddles—all on repeat, until it was time for their next bottle feed. I couldn’t believe how quickly their next feed came. Our second feeding went a bit better, but it was still a stressful event for all involved. My watch reminded me that I was in a dangerously noisy environment, all while I struggled to help Kass and my boys in any meaningful way. Then I heard the front door swing open. I couldn’t believe it was already 9:30 PM and time for me to begin my bedtime routine. I asked my mom if she wouldn’t mind helping out with this feeding to take some of the stress off of Kass (but mostly so I wouldn’t feel so goddamn useless). She agreed, and had one of the boys in her arms for an adult-sized burp while Kass finished feeding the other. Finally, some quiet.

Once both boys were fed, clean, swaddled, and snoozing, my mom and I moved into my bedroom so I could start my night time routine by taking my medication and transferring into bed with my SureHands ceiling lift. My mom had spent the last few weeks getting me into and out of bed, so she had the process down. It took about 15 minutes to get me turned onto my left side, facing my lovely wife and the twins in their bassinet—also where I would lay for the remainder of the night. I was anxious because I knew I would be even less useful in bed, completely horizontal and without the added agency of my wheelchair or the nursing pillow that I relied on to hold the boys. The night was going to be all on my still-recovering wife. I said a prayer and fell asleep.

At about midnight, I was spun awake like a scene from a war movie where a character recovers from a flash-bang grenade. The lights were on and Kass was holding Brody up to her face, pleading with him to maintain a latch on his pacifier so she could comfort Bennett, who was wiggling around like an angry snapping turtle stuck on its back inside the bassinet. I had no idea how I had slept through the first part of what was occurring, so I asked Kass to catch me up to speed. Her response: “I don’t think the witching hour is a single hour.”

Aside from my initial few hours of deep sleep, neither Kass or I slept at all the first night. On top of that, she had spent the night sporadically juggling and caring for our Gremlins. My mom showed up at 7:30 AM and began the painstaking process of getting me up for the day. I felt hopeless as I listened to Kass work through yet another feeding by herself, while my stomach shook from pain and my body contorted from violent muscle spasms. I was a mess, physically and emotionally. I loathed myself more than ever, and I felt snapped back into the throes of grief, specifically the anger phase. I had spent the entire night thinking back to the man that paralyzed me almost a decade ago. Each time I’d close my eyes—with the audio backdrop of my screaming kids—I imagined untethered violence against him. These thoughts did nothing to dissuade my reality. I am a quadriplegic and my family needed me.

My mom got me up and settled, helping where she could with the twins—a welcomed reprieve for Kass. After a little while, she left. Kass and I just stared at each other in shock, asking “every night can’t be like this, right?” I reasoned “this must just be because of their circumcision.” Like clockwork, the boys started up again. I found one laying across my nursing pillow, leaning against my belly which was in excruciating pain. The month of random eating and sporadic meals had wreaked havoc on my neurogenic bowel. To compound this situation, when the boys lay on my nursing pillow, their entire body weights are actually resting against my transverse colon, preventing my ostomy from properly working. In simpler terms, holding the boys actually complicates my guts. What a glamorous life quadriplegia has provided me. I digress.

Within the next hour, Kass’s parents walked through the door. I had no idea that she had texted her mom and asked for some support. They were just the help that we needed, cautious not to overstep, allowing us to navigate things, while also ensuring that we were good. They were the perfect extra hands throughout the day, and incredible company as always, but eventually they needed to head home. The idea of another night was intimidating but I had little time to process these thoughts as my front door swung open. It was 9:30 PM again. Time for me to get in bed, mid witching-hour.

I lay there for another night, turned to my left, staring at Kass while she moved through feeds and diaper changes alone, yet again. This night, intense sadness replaced my anger. I was heartbroken that this was my reality. I couldn’t simply get up and help my struggling wife or comfort my newborns. If anything, I was more work by needing to be catheterized throughout the night. I felt how I did lying in that damned hospital bed in Tacoma back in 2017, completely unable to move my body while a machine did my breathing for me. I thought “there has to be something I can do, this isn’t sustainable for any of us.”

The cycle repeated, and my mom got me up for the morning. Both of my parents helped watch the boys so Kass could get in a couple hours of morning rest. I took the opportunity to schedule a mental health session with my psychologist. While I had a minute on the computer, I created a care.com account and began looking at live-in nannies. I was desperate, and this felt like something, hell anything, that I could do. I quickly realized that this wasn’t a viable option, but I did find a few reputable websites for postpartum doulas during my searching. I left heartfelt voicemails with a few different local organizations, and within the hour I had heard back from New England Doula Support (NEDS).

I was nervous to broach the idea of overnight care with Kass. I didn’t want her thinking that this was some kind of reflection on her mothering or her love for the boys. It was simply the reality that we have twins and I have a disability that touches every aspect of our lives together. This was something I was willing to do because it was a way that I could help my family. Strangely, this external support was my way of reclaiming some self autonomy in the chaos.

I budgeted with the owner of NEDS, and we came up with a schedule of three overnight stays a week, with the Doula coming every Sunday, Tuesday, and Thursday. It was going to be the remainder of the week before we could actually get the Doula to the house, so we had to make the long nights work for the time being. It was time to circle the wagons. We supplemented our sleepless nights with daily support from my in-laws and my parents. My closest friends and family organized a food train, providing delicious meals. I scoured the Internet for every resource about parenting with a disability and learned how to bottle feed with my paralyzed hands. Finally, I could help.

During the week, Kass and I nailed down our schedule, the boys’ surgical sites healed, and we really started falling into our own. I was so proud of us, but mostly, I was proud of Kass and these boys: I have no doubt where they got their unnatural resilience from. The nights were getting easier, and I was finding ways to help out despite being horizontal in bed. I was able to cuddle one boy at a time, using my arm like a seatbelt, comforting one twin while the other either burped or fed. The twins were also getting used to their schedule and bassinet, sleeping for longer stretches throughout the night. I started wondering if we still even needed the Doula.

Our first experience with overnight support had finally arrived, and with it, another range of emotions. There is something very unnatural about someone else caring for your kids. We had felt it previously with the highly qualified nurses and doctors in the Special Care Nursery. Those early days were behind us, yet here we were, still needing support. I tried to comfort Kass by using the analogy of “when a plane is going down, you secure your own face mask first.” Fellas, if you’re ever in my position, do not phrase it this way. We secured the dogs in our room, and somberly went to bed.

Throughout my time in the military, I have experienced my fair share of sleep deprivation. I have also experienced being on the other side of it, when you can finally rest. None of my past experiences had prepared me for how deep those eight hours of sleep I got would be. I was a bit ashamed because I felt like I owed it to my boys to have been up late worrying about them, like Kass had, but that was not the case for me. I woke up well rested and ready to go, but I worried that Kass would not be able to embrace it. The service is pricey, but certainly on par with the amount of required work. Our Doula is extremely qualified, having worked with twins in postpartum care for over two decades. These boys have been in incredible hands since the moment they entered this world. This was no exception.

Each overnight stay has gotten easier and easier, to the point where we look forward to the reprieve, fully knowing that our boys are being spoiled and that we will be better able to care for them during the day. Selfishly, I feel good knowing that I am funding this respite for my entire family. Our Doula has also provided Kass and I with invaluable tips and tricks, further enhancing our abilities as parents. I cannot recommend this service or New England Doula Support enough.

Shortly after getting settled with our new routine, Kass’s brother and his incredible family flew in for an extended visit from Arizona. Living across the US, we always embrace as much time as we can when we are together. This visit was no different. It was time for our first excursion from the house with the boys.

We arrived at Kass’s parent’s house, where everyone was staying. I was nervous for the outing, but also excited to catch up and show off my guys. Within moments of arriving, we were met out in the driveway, and the boys were carried inside in their car seats. By the time I got into the house in my wheelchair, the twins were already being cradled by Uncle Keith and Auntie Joan. The boys met their cousins and we all got settled. Then, like clockwork, they began to stir. I prepared to receive one of my fussy fellas, fully knowing the witching hour was beginning. That is when Aunt and Uncle grabbed warm bottles and started feeding them. The only other hands that took them that night were Kass’s parents, helping provide Kass and I an added break.

The last few weeks have been more or less the same. Daily visits to Kass’s family, my boys being spoiled by everyone, embracing nights with the Doula, and loving every moment with our sweet boys. This entire first month has humbled me completely and taught me many powerful lessons:

• Fatherhood is hard. It is one of the hardest things I’ve ever done in my life, second only to processing my injury, and it has only been a little over a month. It is also—by leaps and bounds—the most rewarding of my achievements. No title will ever compare to “dad.”
• Parenting with a disability is extremely difficult, but it is nothing compared to motherhood. I am in awe of Kass, and with that, every mom out there.
• Support is everything. Without my people, I don’t know if I ever get to where I’m at in life. I certainly would not have the quality of life I have, and with that, the ability to raise good, compassionate men. Thank you to all in my support system.
• Asking for help is one of the biggest things we can do. My injury has taught me to embrace help in many forms, but I never imagined how much I would need it as a father. The stigma around asking for help needs to change. I have always poised that it takes more strength to seek help than it ever does to tough it out alone, and suffering does no good for anyone. Reach out, and lean on your people.

Thank you so much for reading! I am excited to continue learning lessons as my role adapts, all while loving these boys with everything I have. To all that have been involved in our story so far, thank you.

Thank you for following me into fatherhood, and for constantly supporting me! Believe it or not, if you are reading this blog post, you are a part of my support system—and I truly appreciate you. Please consider subscribing to my blog for future post updates!