Caregiver Fatigue
It’s real. It’s literal. It’s pervasive. It’s all consuming. When we haven’t slept a full night, half a night, or maybe not even a full hour at a time in days, weeks, months, maybe even years we get kind of tired, right? Sleep deprivation is serious business.
Yet, who else could possibly believe this is often life for the parent of a child with special needs.
I bumped into a parent of a newborn in a store the other day and they mentioned how tired they were because their baby’s days and nights were switched. At about a week old, that’s not unexpected and we can smile through it knowing these days (and nights) will quickly pass. It is just temporary. But when that becomes life day in, day out, night in, night out; it really takes a toll on us.
I know when my child’s needs were significant, and I rarely slept for a full hour at a stretch for 18 months. I was exhausted. I was discouraged. I felt so alone. We were relatively new to town and I had no support system outside my husband who was working a regular schedule. I was at my breaking point. Did I mention, I was exhausted? Like really, really exhausted.
I was still going to church many Sundays. The pastor became aware of my exhaustion one Sunday and in the following weeks he would ask me how I was doing. Over the course of those weeks, my answer didn’t change. I was still tired. Yet, as the weeks rolled by and my answer, “I’m tired” stayed the same, the look I got from him changed from caring to condemning.
A few years later, my husband and I were meeting with another pastor regarding Hope Anew and coming alongside parents of kids with disability and special needs and he commented, “I wonder what goes through the mind of a parent when they wake up in the morning knowing what’s ahead for that day.” I replied, “You slept?” He smiled and nodded in acknowledgement of his assumption and the gap of understanding even as he was trying to the best of his ability to understand.
As caregivers, it’s easy to feel forgotten, unseen, not understood because so few people have lived this life and our circumstances. They can’t understand the load we are under and the challenges we are battling through every. single. day and night. We often focus on just making it through the next hour or minute and can’t think beyond that.
I know someone who does care. Who does see. Who does understand. We are not forgotten or alone. These words got me through many a screaming (my baby), crying (both of us), rocking chair night, “He tends his flock like a shepherd: “He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young.” – Isaiah 40:11. I was a mother with my “young” and it promises that He will gently lead me. That He gathers me in His arms just as I was holding and rocking my little one in my arms. And He promises that to you too.
Written by Sarah McGuire
SARAH MCGUIRE IS THE MOM OF TWO BOYS AND CO-FOUNDER OF HOPE ANEW, A NONPROFIT THAT GUIDES PARENTS TO CHRIST-CENTERED HOPE AND HEALING. YOU CAN FOLLOW HOPE ANEW ON FACEBOOK HERE.
