Count Your Crosses: The Graces of Fortitude and Perseverance
The cold had run its course through our whole family, taking down each man, woman, and child for days at a time, eating up the entire month of March in early 2011. While everyone else recovered, even five-month-old Teddy, Fulton struggled, weak and congested, long past the point when the other four were back to bouncing off the walls. He didn’t want to eat or drink. In a last-ditch effort, my mother-in-law tried feeding him ice cream as he lay lethargic in a bean bag chair, anxious to pack calories into him and hopefully perk him up. We’d learned that kids with SMA [Spinal Muscular Atrophy] had a tougher time with respiratory infections, but this was our first experience with a serious cold Fulton couldn’t shake. I’d heard of things like cough assist machines and wondered if we should have one for times like this. We were hardly experts in the boys’ condition yet, and since I’d resisted making friends in the SMA community, I didn’t know who to ask for advice. Finally, as a fever appeared, we took him to the Children’s Hospital of Philadelphia Emergency Department where we would be thrust into the deep end of caring for a medically fragile child.
We soon learned Fulton had a dangerously low blood oxygen level and pneumonia in one of his lungs. We were admitted and told to expect to be inpatient for several weeks. I was still nursing Teddy, and brought him along with me every morning. Tony would come over after work in the evenings and spend the night.
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I was introduced to the cough assist machine, which helps create the pressure needed for weak kids to have a good cough and clear their lungs. Fulton hated it, and often didn’t cooperate, and then screamed as long suction tubes were stuck up his nose and down his throat to remove all the gunk he couldn’t clear himself. He was placed on a BiPAP machine with oxygen and learned to sleep with a mask covering his face. The machine would force a little extra air into his lungs with each inhale. Respiratory therapists, nurses, and doctors were in and out of his room constantly educating me on a whole side of SMA I’d been blissfully ignorant of until then.
When Fulton was finally discharged after “only” thirteen days, they sent a medical equipment company right over to drop off all our new equipment and explain everything to us. The downstairs bedroom became a mini hospital suite and we learned to perform various medical tasks on our son. Although we were home, there was still a litany of things that needed done to help Fulton finish his recovery, and a slew of new follow-up appointments were scheduled.
SMA had come in and completely upheaved our life, changed it, and promised to barge back in again next cold and flu season. More steps were added to Fulton’s care; more things I couldn’t forget to do; more things to do in a day and less time for me to sit down and relax for one moment. How was I going to find the time to do all this on top of homeschooling and caring for the other four kids? And how much longer until I had to do all this new stuff with Teddy?
Rather than resent all this additional work, I tried to view it as another way of serving my son and loving him. Even when it was uncomfortable for Fulton to have a new tube placed down his nose, or breathing treatments disrupted his play time, I tried to remain calm and remember that sometimes what we need for our health, both physically and spiritually, doesn’t feel good. It wasn’t easy. I got angry, I cried, and I had embarrassingly little patience. In usual fashion I created lists and plans on how to make all these new items fit neatly into our days, with mixed results of success.
It was not in lists I found peace, but in knowing this situation was in God’s hands, not mine. I only had so much control over Fulton’s health, the competence of the medical staff, and my own ability to remember everything that everyone needed at any given moment. I had to trust that as long I continued the work laid in front of me, God would handle the rest.
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In his papal election address, Pope Benedict XVI said, “The fact that the Lord knows how to work and to act even with inadequate instruments comforts me, and above all I entrust myself to your prayers. Let us move forward in the joy of the Risen Lord, confident of his unfailing help. The Lord will help us and Mary, his Most Holy Mother, will be on our side.”
Sitting on the throne of Saint Peter versus raising a child with special needs are two completely different things, but that feeling of overwhelm, of being saddled with a task too great, is very similar. Nevertheless, God knew what He was doing when he blessed us with this work, so choosing to persevere means we choose to love the task at hand, whether it’s sitting bedside in the hospital or reading Hop on Pop for the nine millionth time, rather than complain about it. If you realize you missed administering a dose of medicine, or fed your child something he shouldn’t have, don’t beat yourself up and consider yourself a failure; persevere by accepting your mistake and then immediately working to fix it, realizing this mistake doesn’t determine your worth as a parent or child of God.
When we keep our eyes on the big picture, on God’s unending love and support and blessings and joys He’s given us in our present circumstances, we can persevere even when illness or problems arise.
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Pray for the strength you need for that day, or that hour, or the next ten minutes if need be. We are all insufficient instruments, but we can do the tasks God has laid before us.
Excerpt from Better Than OK: Finding Joy as a Special-Needs Parent by Kelly Mantoan. Copyright © 2023. Used with author’s permission.
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.
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