Pruning My Idea of a Perfect Life

At some point early in our marriage, my husband and I took a shine to the idea of living on a self-sufficient homestead. After poring over books about the Catholic back-to-the-land movement, Catholic Worker farms, and homesteading, we thought we’d found the perfect escape from the normal 9-to-5. We had our plan: purchase a house on a small plot of land and provide for ourselves as much as possible, with the hope my husband could eventually quit his job, or at least reduce his hours to part time. 

After a long search during a hot real estate market, we finally settled on our perfect home. A flat acre with a cute, century-old house surrounded by protected farmland. Plus it was still close enough to the train for my husband’s commute and near our church community. Though the house needed some work, it had what I thought was a good layout for our growing family: a small bedroom on the first floor for Tony and me, and upstairs two large bedrooms, a bonus room, and a large hallway for the kids to make their own. I was very pregnant with our fourth child in six years, and I envisioned plenty of room for bunk beds, toys, and enough closet space which would hopefully leave our first floor clutter-free. 

We moved in at the end of July when our fourth child Fulton was just a month old. In that first summer we got right to work setting up gardens, building a barn and a chicken coop, and repairing the wood stove. The kids ran around outside until it was dark, catching fireflies, roasting marshmallows over our fire pit, and coming inside covered with grass stains and the smell of earth. We’d gotten rid of our TV and celebrated this wilder, free-range life we were allowing them. 

But as we approached spring, I couldn’t focus on the seed catalogs or our growing flock of chickens. Fulton was not meeting developmental milestones, and the subsequent worries, fears, and Dr. Google search results were all-consuming. After a long period of waiting and searching, just before his first birthday we received a diagnosis of Spinal Muscular Atrophy (SMA), a degenerative neuromuscular disease that, at the time, was the leading genetic killer of children under two. 

Instead of celebrating his first birthday and eagerly awaiting the steady stream of milestones I’d witnessed in my older children, I sunk into mourning. I didn’t know how many hopes and dreams I’d pinned on my tiny son—until they were taken away. I didn’t know that there could be so much grief in losing not a person but the potential I believed that person was owed by God. I didn’t realize how I would mourn, not only this devastating diagnosis, but the idyllic life I’d built in my head. Our goal had been self-sufficiency, and we maintained a belief that we controlled our land and our future. But just like that, the life we’d envisioned for our family became uncertain. 

Home improvements now became focused on making our home wheelchair accessible by adding a large ramp, widening doorways, and finding creative, cost-effective solutions whenever possible. We had to move toys and Fulton’s bedroom downstairs. The real estate market had cooled considerably, and we were underwater with our mortgage. Moving to a more accessible home was out of the picture for the time being. As my time was taken up with more and more of his appointments and caregiving, weeds took over the garden, the plans for canning were set aside, and we knew in silent glances exchanged over coffee that my husband’s health insurance was not something we could give up any time soon. 

I was angry with God. Why had God given us this idea to homestead? Why lead us to this home and make us believe this was possible if this was what was in store for us? Why inflict this diagnosis on our son and rob him of any opportunity to walk, run, ride a bike or live a long and healthy life? I thought I knew what a joyful life looked like and what it required, and a power wheelchair, regular hospital admissions, and nonstop, exhausting caregiving was not a part of the joyful life I had pictured. We had our plan; everything was going as planned; and now I didn’t even know how to plan for tomorrow, let alone the distant future. 

And for a little while, things got harder. My in-laws moved in with us. I got pregnant and was on bedrest due to hypertension. My husband was laid off. Our youngest son Teddy was born six weeks early and diagnosed with the same condition as his brother. The future was simply scary, and I continued to mourn all that I believed had been stolen from us. 

But during my youngest son’s first year, I rediscovered gratitude. As Teddy hit certain developmental milestones that his brother couldn’t, I thanked God. As Teddy gained weight, I smiled and gave thanks. As he rolled over and eventually crawled, I actually felt myself praising God for His goodness. Even though I knew Teddy’s diagnosis of SMA would catch up with him and steal these achievements, that knowledge didn’t sour the moment, nor make me withhold my thanksgiving. It felt good to be on friendly speaking terms with God again and for my prayers to extend beyond desperate pleadings or angry silence. 

It was a slow process to find joy where I didn’t think joy could exist—in illness, in exclusion, even in suffering. I found no matter what, I could be thankful, and because there was always something to be thankful for: there was joy. God was directing all things to a larger, joy-filled purpose I didn’t always understand, but I now knew existed. My life was not a beautiful glossy spread from Mother Earth News; we were not self-sufficient, and I realized we were never meant to be. We were meant to lean on one another, lean on our families and friends, and lean absolutely on God as He walked with us in our struggles and tried to show us the joy and beauty we weren’t allowing ourselves to see.

God removed the scales from my eyes, and I saw a life full of blessings and happiness, of children who laughed and played and sucked the life out of every sunny day on bare feet and muddy tires. Our homestead didn’t grow vegetables; it grew resilience, sprouted perseverance, and produced fortitude alongside thankfulness, and they all bore joy as their fruit. I pruned back my ideas of a perfect life, and instead harvested a better one than anything I could have imagined. When I removed my need to be in control, and instead replaced it with trust in God, His grace was sufficient.

---

Kelly Mantoan is the author of Better Than OK; Finding Joy As A Special Needs Parent, and the founder of Accepting the Gift, a national ministry for Catholic parents of children with disabilities. When she’s not encouraging or advocating for special needs parents, she enjoys reading, thrift shopping, and occasionally blogging at This Ain’t the Lyceum. Kelly is a happily married Catholic convert with five children who loves living near the Jersey shore.