When parents of kids with disabilities get ahead of themselves––and let me be clear, I’m speaking from personal experience––here they remind me of Jodi, a kindergarteners I taught long, long ago.
She was the daughter of a family friend, and I’d known her since she was three. She was bright, curious, articulate, organized, and driven pre-schooler. Before she set foot in my classroom, I knew she would be hard to keep up with once she got there.
The first day of school I showed Jodi where to put her lunch box and tried to lead her into the classroom. She planted her little feet and looked me in the eye.
“What happens first today?” she asked.
“You put your school supplies in your desk.” I replied.
“Then what?”
“We’ll say the pledge.”
She waved my answer away. “No, not that. What are we learning first?”
“Oh,” I said. “Reading.”
“What happens during reading?”
I gave her my Cliff Notes version after which she asked, “Then what?”
“Recess,” I said.
“And after that?”
“Math.”
“What’s math?”
At this point I put a stop to her grilling by saying, “Jodi, you’re getting ahead of yourself. You need to trust me to explain what comes next when the time is right. Now find your desk and unpack your school supplies.”
Grim-faced, she went to her desk and did as I’d asked. By the end of the day she had experienced everything she’d wanted to know before school began. Her parents later told me she had an emotional meltdown after school and fell asleep during supper. Which goes to show that bright, curious, articulate, organized, and driven five-year-olds are still just five years old.
From @element5digital on Unsplash
A few years later, our son was born and diagnosed with EA/TEF. Immediately after receiving the diagnosis, I prayed, “God,” I asked, “what happens next?”
He answered when the diagnosing doctor said our son should be life-flighted to a university hospital almost a thousand miles away for immediate surgery. In the intervening two days, I aimed a barrage of questions at God.
What happens next?
What happens when we arrive at the NICU?
What should I do?
What if we make the wrong decisions?
How long will his recovery be?
Once I arrived at the hospital with my questions unanswered, I unloosed them on our son’s primary nurse. God then used her to gently say that I was getting ahead of myself. She didn’t use those exact words, but I got the gist of her message.
I was acting just like Jodi.
During the next several years of our son’s medical journey, I got ahead of myself often. Over and over God ignored my questions and told me what I needed to know at the right time and not a minute sooner. My trust in him grew as he used Jodi to reveal three reasons for not telling me ahead of time what he knew was going to happen.
First things must come first. Jodi had to put her school supplies in her desk so the supplies she needed were at hand. Our son needed surgery to save his life before anything else mattered. God often waits until the first things are completed to move us forward.
Context develops through experience. Jodi had no context for math until she learned math is about numbers. I had no context about NICU until we were there and no context for our son’s recovery until I saw his scars and the tubes, needles, and machines keeping him alive. Only when the context was in place did God reveal what he knew we needed to know so we could advocate and care for our son effectively.
Maturity develops over time. Jodi’s mind was mature for a kindergartener. But her five-year-old emotions and body betrayed her once she got home. I was exhausted after our son’s birth and had to leave NICU to rest often. Grief for my son and the trauma of his situation played havoc with my emotions during his first few weeks of life. I had to acknowledge the limits of my maturity and grant myself grace and time to mature so I was ready to handle added responsibility.
As parents raising kids with disabilities, we will get ahead of ourselves. We will attempt to do what God knows we’re not yet ready to do. Sometimes, he’ll put someone alongside us who will put on the brakes so we slow down. Sometimes, especially when we refuse to listen and barrel ahead, he allows us to fail. Because he is a good and gracious God, he also picks us up. He invites us to entrust our kids to him until we graduate from kindergarten and are ready for what he knows is coming next.
“For still the vision awaits its appointed time; it hastens to the end—it will not lie.
If it seems slow, wait for it; it will surely come; it will not delay.”
Jolene Philo is the author of several books for the caregiving community. 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 Amazon. See Jane Dance!, the third book in the West River cozy mystery series, which features characters affected by disability, was released in October of 2023. The audioversion of Book 1, See Jane Run!, was released in November of 2023.
