How we spend our days is, of course, how we spend our lives.
What we do with this hour, and that one, is what we are doing.
A schedule defends from chaos and whim. It is a net for catching days.~Annie Dillard
I love Annie Dillard. Her books on writing were like life preservers to me when I left teaching to follow my dream of becoming an author. I followed her advice for wannabe writers and wove my own net for catching days. I bought a planner, and made a schedule. After decades of caring for my dad with multiple sclerosis, our son with special needs, our creative daughter with dyslexia, and teaching young children for 25 years, I loved the order of my life as writer. I still do.
The lack of noise provides time to rest.
The lack of interruptions allows me to think.
The lack of one crisis after another means I can breathe.
The lack of caregiving duties means I can plan and write.
Every day I am grateful for the time I've given. But I often feel guilty for this respite because I remember being overwhelmed and exhausted when our son was small and very sick. Many caregiving parents are spending their hours and days in that place today. Maybe you are in that place today.
There's no time to rest.
There's no time to think.
There's barely room to breathe.
There's no way to plan because chaos reigns.
Even so, as Annie Dillard says, how we spend our days is how we spend our lives. Those words may sound cruel to parents caught in the chaos of caregiving. There was a time in my life when I would have hated those words. I was given no choice in how I spent my days. My parenting journey was not what I expected, not what I had planned. Not at all.
Photo credit: Nathan Dumlau on Unsplash.com.
But when I'm honest with my beleaguered, former caregiving self, I can admit to the lie I bought into. While it was true that I couldn't decide what filled my hours and days, I could decide how to respond to the challenges our family faced.
I could be grateful for each day we had with our son,
or worry that he might die young.
I could rejoice to be able to pump breast milk to pour down his feeding tube,
or mourn because he couldn't nurse like other babies.
I could thank God for leading us to doctors who knew how to help our baby,
or complain about how far we had to drive to doctor appointments.
I could smile when our baby reached milestones,
or cry because they were delayed.
I could trust God had a good plan for our son,
or doubt God's goodness.
Truth be told, I was given plenty of choices. Too often, I chose to worry. I chose to cry. I chose to complain.
If how we spend our days is how we spend our lives, I came very close to being caught in a net of bitterness. Because of how I chose to spend my hours, I almost missed the joy of being a parent. I almost missed the warmth of his small body snuggled in my arms. I almost missed the silkiness of his baby skin when changing his diapers. I almost missed inhaling his sweet baby smell.
Then, one day I realized my baby frowned more than he smiled. He frowned when I did, which was most of the time. He rarely smiled because I rarely smiled. Because of my choices, my baby and I almost missed experiencing joy.
Because how we spend our days is how we spend our lives, here's my advice for you as a special needs parent. Instead of choosing a planner and a schedule to manage what God's given you, choose how to respond.
Choose to smile, to be grateful, to trust God, to stay thankful. In doing so you will weave a net for catching joy, and a life of joy is a life well spent.
Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She's also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon.
