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When Kindness Showed Up as My Baby With CHD Fought for His Life

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Five years ago I sat on my stairs drawing broken breaths in between sobs with an infant in my arms and toddler by my side. The three of us were in tears together. Life was overwhelming. Our son had three life-saving surgeries in his first three months of life. My husband was deployed overseas for our son’s first eight months of life.

I struggled to balance time beside my son’s hospital bed and quality time with my daughter. When we were finally discharged, I headed home alone after passing training on infant CPR and feeding tube placement. One month after being home from the hospital, I called 911 frozen in fear as I began to see the signs of congestive heart failure that I was told to look for. It turned out that part of my son’s colon had died, which required more surgery and me learning how to change an ostomy bag. More things I was never prepared for.

As I transitioned off maternity leave, my company made an error in turning on my pay and mentioned that I wouldn’t get a paycheck for a full month. That was devastating. My boss did everything he could to help, but the payroll team wouldn’t budge. So my boss at the time asked how much I needed and wired my paycheck amount from his personal account until I got paid. That put my gas in my car, food on my table, covered my utility bills and let me put presents under the tree for Christmas. The impact of his generosity and kindness is still difficult to capture in words to this day.

Returning to work was harder than I imagined. I was trying to be a good employee and mom, balance doctor appointments and early intervention therapy sessions, monitor tube feeds, change colostomy bags, play with my daughter, feed my dogs, clean my house, do laundry, cook dinner and just survive the days. I felt like I was failing at everything. Some days I could hold the tears in until the end of the day.

Some days I would use half of my lunch break to cry and the other half to compose myself so my face wasn’t red and splotchy when I returned to my desk. I didn’t know how to ask for help. Anytime people would offer, I would just respond with, “I’m fine, but thank you so much for offering.” I have always been fiercely independent but in this case, I wasn’t intentionally trying to be independent. I just didn’t know any other way. There were people in much more need than us and I didn’t want people to go out of their way to help with something I felt was my responsibility to do. Asking for help was this strange barrier that I could not overcome. In my mind, it meant admitting failure and that I was somehow less than for not being able to manage everything on my plate.

While in the hospital for my son’s third surgery, a fellow mom stepped away from her son’s bedside to bring me a cup of coffee and see how I was doing. We talked for a few minutes before she asked, “Is everyone telling you that God won’t give you more than you can handle?” I just responded with, “God is significantly overestimating me.”

She followed with, “God will absolutely give you more than you can handle. And then he will send people to help fill the gaps that you can’t cover on your own.” A few weeks after that conversation is when I found myself crying on the stairs with my kids.

I made it through that night on the stairs and the next few days on autopilot. But soon after, I received a call from another mom who had been through a similar journey. She told me, “I am going to help you. So now you need to tell me how.” She asked what I needed help with — meals, yard work, childcare? I told her meals would be great and almost instantaneously a meal train was set up with slots filled with nearby families who took their time and money to feed my family. Every other day I met a new person, spent time getting to know these generous people and received a new meal that broke the monotony of Lunchables and SpaghettiOs that were the extent of what I had time to prepare on my own.

Before our son was even born, a local family photographer found someone at the out-of-state hospital where we were and arranged for someone to take newborn pictures for us. We had been told it would be a medical miracle for him to ever come home and she went out of her way to make sure we had beautiful pictures of our baby boy, even as he fought for his life.

That same photographer called us months later asking to come by our house with someone we needed to meet. I thought maybe it was another family we could talk to and help. It ended up being someone from a local business who walked into my home and dropped a crate full of kindness: toys for my kids, a year’s supply of diapers, a spa day for me to rest and recharge, a year of cleaning services for our home and a date-night gift certificate for when my husband returned from deployment. I had never met these people in my life and here they were, swooping in and changing mine for the better.

Eventually, the doctor visits and therapy sessions lessened, the surgeries became a memory, our family was reunited and life began to normalize. That first year was rough. But as time passes, I don’t remember the brokenness and fear that consumed my then daily life.

I remember how family and strangers alike showed up to fill the gaps in our lives. I remember how they gave me hope at a time where I felt hopeless. I remember the smiles they put on our faces and the strength they gave me to get through each day. When I reflect on the surgeries and the uncertainty from that time, my tears come from a mended heart, not a broken one. I look for opportunities to pay that kindness forward, but honestly, I don’t know that I can ever give back what was given to me.

And even today, when moments become overwhelming, I close my eyes, take a deep breath and look forward to meeting the next guardian angels heading our way.


Getty image by Milkos

Originally published: September 29, 2018
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