It’s a Friday evening and I am at the elementary school carnival with Josiah, Paul, and Zack. It’s unusually cold even for Colorado in the Spring. Zack and I are standing in line waiting for his turn at the inflatable slide. He’ll get to crawl up 15 blown-up steps and then slide down the big slide. Twenty five minutes of waiting for his shining moment of 5-year old glory.
Zack chatters me to excitedly, “Is it my turn for the slide yet, Mom? Mom, is it my turn yet? Mom, when is it my turn?”
“Soon, Zack, soon it will be our turn.” We discuss if Zack will be able to climb to the top on his own, or if I’ll need to climb with him. Zack has balance and motor planning issues yet he’s made great strides with physical therapy. The steps are slippery but we both think he can make it.
Zack greets the boy standing in line in front of us. Zack knows him by name and the mom and boy know Zack. Many people at the carnival tonight come up to Zack to say hi. With his red wrap around glasses and his number-11-on-a-scale-of-1-to-10-enthusiasm, Zack’s a charmer.
This young boy and Zack consider themselves classmates although they are several years apart in age. Schedules make it so they land in the special education classroom at the same time period each day. To them, friends are friends and age is unimportant.
I watch as the young boy reaches the front for his turn at the slide. His eyes sparkle with anticipation. As he fumbles taking off his shoes, his mom bends down to help. I cannot guess his challenges but physical movements do not look to be easy for him.
Having overheard my previous conversation with Zack about going up the steps, the boy’s mom turns and says to me over her shoulder,
“I wish my son could go down the slide on his own.”
I want to hug her at this moment. I can so relate to her frustration. As much as we love — intensely LOVE our children with special needs — we sometimes long for them to be able to do the normal thing in these situations. And it’s not wrong to wish for it.
I distinctly remember a day about four months after Zack was diagnosed with his rare genetic metabolic condition. The diagnosis requires an extremely regimented low protein diet for the person with the disorder, along with intense monitoring of illness (including hospitalization) in order to prevent metabolic crisis. On this particular day, our family and Mike’s parents had gone out to eat at Chili’s restaurant. I sat watching a family with a little girl about a year and a half old, near Zack’s age at the time. Her mom was absentmindedly feeding her from a couple jars of baby food and some pieces of French fries off her own plate. I had to excuse myself from our table and hide in a bathroom stall so no one would hear my sobs of frustration. I was angry with that mom for getting to do something so simple without thinking about it. She didn’t know how lucky she was! Never again will our family have a day that Zack’s restrictive diet and needs won’t be a part of our lives.
Zack’s enthusiastic questions about the slide might end after this ride is over, but probably not. More than likely his conversation will continue. Due to situations that happened to him as a baby before he came to our home, Zack’s brain processes differently. He gets stuck on a certain phrase or idea and perseverates, sometimes repeating it hundreds of times.
I look back to the boy ahead of Zack in line. He starts his slow ascent up the steps, making it part way up on his own. His mom watches from below with a mixture of pride and trepidation. She pulls out her pink iPhone to snap a quick picture. She is intensely watching her son and her eyes never leave him for a moment.
I long to ask her as one mom to another,
“Do you ever feel so deeply emotionally exhausted you wish someone would give you a long break? Not a couple hours, but a real break way beyond what a nap could fix?” I do sometimes.
“Do you feel guilty for wishing your child could be normal?” I do sometimes.
“Do you wish other parents would just get it? You know they have it rough too — all parenting is hard. But damn it, I didn’t sign up for this. Do you ever think that?” I do sometimes.
Mostly I want to tell her, “You are doing a good job. You are a great mom.”
I’m about to reach out to touch her arm, but just at that moment her son grows weary of climbing and stumbles on the steps, so she pockets her phone and her grown-up pride and climbs up the inflatable to go after him.
Together they reach the top and sit down at the edge of the slide, bouncing up and down twice as they get ready to go. Her son’s smile is enormous at the prospect of the slide down. She is beaming too. I have tears in my eyes as I look around at the other kids and adults who should be enjoying this moment. Everyone else is busy chatting or trying to stay bundled up against the chill. No one else is watching. People are missing it. Mother and son laugh together as they gleefully swish down, tumbling and exchanging grins at the bottom.
I clap until my hands hurt calling, “Great job! Great job,” unsure if I’m cheering for the boy or the mom. I swallow back tears.
Zack’s turn is next. He takes twice as long as most other kids, but he makes it to the top on his own. People are cheering for him. He slides down with the biggest grin.
“Yeah, Zack! Way to go!” other kids and parents call. I clap but I can’t join their cheers. I am crying. This parenting task is so frighteningly hard. It’s enormous and it’s beautiful and I’m not strong enough. Then God graciously gives me the gift of a moment to get me through one more day.
I reach down to pick up Zack’s shoes. The mom and her son are gone.
“Mom, is it my turn for the slide now?” Zack asks. “When is it my turn? Will it be my turn tomorrow?”
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