One month ago my baby was discharged from the hospital.
For six bewildering weeks, I stayed by his bedside (cribside?) in the cardiac intensive care unit as he recovered from a life-saving surgery. I watched as they took him back to the operating room where the surgeon corrected multiple congenital heart defects and implanted a permanent pacemaker.
I listened as doctors stood outside the door, discussing why my baby’s kidneys and liver were inexplicably failing. I waited for the swelling to go down so they could finally close his chest, leaving a raised scar the length of his sternum.
I nodded, pretending to understand when they told me that he needed a stent placed in the conduit of his newly-repaired heart.
I think I cried when they told me they’d found evidence that he’d had bleeding in his brain during surgery, and I know I prayed when they told me, a week later, that he’d had a stroke right before we were supposed to be transferred to the step-down unit.
All night, I sat up, rocking him as he thrashed and vomited, withdrawing from the pain and sedation medication. My husband and I held hands each time a doctor walked in, we spent a small fortune on bad coffee and took turns sleeping on the bench in our son’s hospital room.
I worked the whole time.
At my 20-week ultrasound, the tech barely got the words “Congratulations! It’s a boy!” out of her mouth before she turned pale and left the room to get the doctor.
We were told to prepare ourselves for the worst. My husband and I cried in the car and then he splashed water on his face and went back to work. I went home and, because I am my own boss, crawled into bed without saying a word to anyone.
The next day was a different story, however. My upended personal life didn’t change the list of deadlines to meet or shorten the stack of invoices waiting to be sent out. With no HR person to notify or FMLA policy to consider, getting back to work seemed my best, albeit only, option.
As my belly grew, my husband’s PTO dwindled. A key employee at a small, largely seasonal business, he struggled to balance his desire to accompany me to an endless string of doctors appointments with his deep-rooted need to deliver the highest level of service to his customers.
My husband and I cried in the car and then he splashed water on his face and went back to work. I went home and, because I am my own boss, crawled into bed without saying a word to anyone.
Before the news of the baby’s heart defects, he’d been on the cusp of striking out and launching his own business and we’d sit at the table after dinner each night, making plans. Suddenly, with so many unknowns and so little control over anything, I wondered if we’d ever regain an appetite for risk.
Amazingly, the news we received got a little better at each successive appointment until, on a frigid morning in February, a specialist at the children’s hospital in another state looked at us from across a conference table and said “Yes, this is a very complicated set of circumstances, but it’s what we do. Go home, paint your nursery, and get ready to bring home a baby.”
I snapped a picture of the upside down heart with the backwards plumbing drawn on the whiteboard. We held hands and smiled the whole way home.
And just like that, everything changed once more. My husband went back to work the next day and cried with joy and relief when he told his colleagues and customers our happy news for the second time.
With no HR person to notify and no maternity leave policy to refer to, I jumped back into my work with a new resolve. I signed on new clients and began making strategic plans. My baby was coming. I needed to get ready.
We hoped for the best and prepared for the worst, as you do when the information is vague and the prognosis only a few shades better than grim.
With no HR person to notify and no maternity leave policy to refer to, I jumped back into my work with a new resolve.
The medical team insisted that I deliver near the children’s hospital so they could operate on the baby immediately after birth if necessary, so I moved down to the city at 37 weeks to work and waited while my husband stayed at home, scrambling to finish all his projects and conserving the little leave he had left. I finished my last big project for a client, my husband arrived, and 2 days later our son was born.
The combination of our son’s cardiac defects ended up creating strange and beautifully balanced circulation within his heart. The doctors had warned me that he might be small, blue, and sickly.
So when they placed a big, pink, vigorous baby on my chest I couldn’t quite comprehend what was in front of me. Who was this? My heart knew, though, and just like they say, all the exhaustion, pain, fear, and uncertainty of the past months fell away and I knew that I would do everything I could to protect and provide for this perfect little creature.
And so, for the next 11 months, we watched our baby defy the odds and the doctors’ expectations as he grew bigger, stronger. The life-saving surgery that was planned for birth was pushed out to 4 months, then to 6 months, then to 9.
Some days I forgot anything was wrong. Yet, as thrilled as we were to delay surgery and give our son the best possible chance, the big, scary event ever-looming on the horizon made it impossible to move forward with plans for work or life in general.
Finally, just 3 weeks shy of his first birthday, we packed our bags and headed back to the children’s hospital, prepared for a 2-week stay. My husband and I kissed our son and then held hands and cried as we walked back to the waiting room.
I can’t imagine navigating the past 18 months of touch-and-go terrain while working at a “normal job.”
I can’t imagine navigating the past 18 months of touch-and-go terrain while working at a “normal job.” The presidential primary race’s early focus on paid family leave highlights the shortcomings of our current system and even the most family-friendly, pro-maternity businesses need their employees to show up once in awhile.
For so long I held up working for myself as an achievement of the highest magnitude — the Holy Grail of personal freedom and professional flexibility — and I’m deeply grateful that I’ve been able to truly put my family first in this time of relative crisis.
To some extent, it’s been a false freedom, though, supported by the safety net of my husband’s health insurance and the knowledge that, as an experienced registered nurse, I could go find a job with full benefits in less than a day. Plus, as someone born in the last days before Generation X faded into the reign of the Millennials, work-based security has always seemed a bit like a fable.
Social security? Don’t count on it!
Employee-sponsored healthcare? Not actually a guarantee!
Comprehensive, lasting health care reform? Well …
Yet, in the weeks since we’ve arrived home, I’ve often wished there was a watercooler to congregate around, a colleague to commiserate with about the low-grade anxiety and exhaustion that moved in when my baby got a pacemaker and had a stroke before his first birthday.
And I’ve wondered — as our beliefs and values and priorities have changed when it comes to work, what are we giving up as we evolve into a more mobile, agile and less tethered workforce?
In the waiting room on the day of the surgery — and over the next 6 weeks — I was struck repeatedly, however, by the fact that my story was the same story being played out all around us.
Sure, the variables looked different from one family to the next. My baby’s heart surgery is another person’s mother incapacitated by dementia, or a daughter with debilitating Crohn’s disease. In the waiting room, in the elevator and cafeteria, everywhere I looked I could see only people like me, trying their best to fit the pieces of work and life and family and home together — to keep the balls in the air and the train on its track.
Perhaps this is our starting place — acknowledging that the business of life is complicated. That caring for ourselves and our families, whatever shape they take, while being a good employee, neighbor, and citizen, is a full-time occupation. Our laws and codes and policies can only ever reflect our priorities.
My son? He’s doing fine — great, in fact. Because of the miracle of modern medicine and the resilience of children, his sternum has healed and he’s back to crawling and climbing and throwing blocks with abandon.
Because I’m a mompreneur, he’s steadying himself on my leg as I type and gleefully sinking his teeth into my knee. There’s no HR person here to notify, but I doubt I’d file a complaint anyway.
Kathryn Smith is the author of Mompreneur — an ongoing series tackling the issues facing working moms. Have a topic to suggest? Email firstname.lastname@example.org.