Raising children is hard. Raising children with special needs (such as mine) is exceptionally hard. Again and again you will confront the fact that their disability, disease, or disorder does not take a day off. Does not care what state you are in as a caregiver. Never ceases to work in ways and to degrees in your child’s life that you will never fully understand or contain. That Thing that afflicts your child is relentless, and if you think you’ve rigged together a system to keep it under control, you’re dreaming.
Harsh talk. But looking at your child’s situation square in the eye does serve a purpose. To make you realize, with sobering clarity, that you cannot do this alone. You must ask for help while caring for a human being whose needs will always exceed your ability to meet them.
A while back, when my then-nonverbal son was sick, I found myself near tears as I dragged myself around the kitchen, trying to get supper together. It had been a grueling day tending to a five year old who could neither tell me how he felt nor what he wanted to ease his distress. I was running a greater-than-usual sleep deficit, having kept vigil over him through the night. My world had narrowed to a single, tunnel-vision point. All I wanted was to find the special measuring cup that goes with my rice cooker, so I that I could make rice. It’s an object that my son often steals to add to the collection of plastic items he spins on flat surfaces. It’s a self-soothing behavior for him, this hoarding and spinning, the remnants of which routinely lie scattered about the house in the places he visits for that purpose.
Earlier that day I had been praying, or rather, blubbering, as I often do when I’m absolutely depleted and railing against a deity who does not seem to care. I believe I had said— out loud, like a raving lunatic—something like: please please please put what I need into my hands right now.
It seemed so unfair, as I orbited my kitchen, pawing through cupboards and clutter on countertops, that I be denied this one simple thing when I was so damn tired from taking care of everybody else. (I was looking for a freakin’ cup, after all, not a footbath).
Somehow I had stopped in front of the island in the center of our kitchen. Somehow I had started opening the doors of the island, bending down to look inside where I keep all manner of storage containers in two big bins. And somehow—I honestly don’t know how—something fell into my outstretched hand from above as I groped in a bin below.
I looked down at what I was holding, dumbstruck.
The rice cup.
It had literally fallen into my hand.
I could have wept.
Incredibly, I remember thinking: it’s all worth it if He speaks to me like this.
And by “all” I meant—in that thunderstruck instant— the grueling, often demoralizing race that I run on behalf of my son. The one that makes my path diverge so dramatically from those around me whose lives appear to unfold in greener, saner pastures.
What was it that caused my heart to leap so meteorically when the rice cup hit my hand? To feel that none of my labors have been in vain?
I’m not sure I can provide an exhaustive explanation for what my heart glimpsed (can we ever?) when the veil between heaven and earth lifted in my kitchen and I saw through to the other side. The side where my son is well and whole in his own way, living a life of joy and purpose. The side where he no longer needs me to watch him like a hawk every second lest he harm himself. The side where he can take care of the basic needs of his body and has enough coping skills to navigate his way, mentally and emotionally, through his daily life.
When the cup hit my hand I grasped, down to my bones, that I am not alone. Someone was listening to me. Closely. Someone with the power to grant my desires, from the smallest to the greatest. Someone who knew how to speak to me in language that would cut through the layers of my despair to reach the living core beneath.
My struggle was known. I was known.
And, dare I say, I was loved. Loved by One who was trying to draw a direct line in my mind between that night’s dinner and my child’s destiny. If I bothered to ask, He would bother to answer. Provide what’s needed to get me and my boy where we need to go. Intact.
The wisdom the rice cup measured out to me that day was this: Ask. You don’t have to express your need perfectly, or even all that politely. Just say it.
If you dare, say it to the One who listens to you—searchingly, unceasingly.
If you are not so inclined, say it to a friend, daring to believe that divinity so often works through humanity, as one person serves another.
Be specific (“Could you bring us a rotisserie chicken for dinner?). And if you’re new to asking for help, be small (“Could you fold this load of towels?”). Make it easy for everyone involved (including yourself) to rise to the occasion.
And finally, be ready. Small things may begin to drop into your life that speak loudly to your soul.
Who knows? You may find that as you let yourself be known—and loved—in the midst of your struggles, you will find strength enough to share. There’s healing in that too.
Because that’s how we start to beat back That Thing that afflicts us, no matter its form.
Word by brave and honest word. Said and heard. Together.