The flickering candle and the click of my keyboard are the only sounds in the room with me tonight. My heart feels tender and raw, and my eyes burn from the tears they’ve been swimming in over the last few hours.
You see, my husband and I have a precious son with a neurological disorder that causes emotional and behavioral problems. We have good months and bad months, good days and bad days. Today has been a bad day.
Our official diagnosis is ADHD and Asperger’s Syndrome, but if you look up “bipolar disorder” or “oppositional defiant disorder” or “borderline personality disorder,” you’ll find many of the same symptoms that live with us inside of our beautiful, nine-year-old child.
The symptoms look so neat and tidy on the healthcare websites, sitting there in those perfectly aligned, bulleted lists. They look benign—like you could just select them and delete them if you so chose—impulsive behavior, persistent dark thoughts, social and communication deficits, extreme emotions, difficulty coping with the demands of everyday life.
The truth is that these little words—these “symptoms”—regularly show up in bodily form and press my face against the laundry room wall. They twist my arm behind my back and force me to my knees when I’m trying to get dinner on the table or help the kids with homework. They keep me from ever getting my balance, strolling by and giving me a shove when I least expect it.
This is my whole family’s normal.
Many days it feels like we’ve set up camp in a landmine field. I’m constantly vigilant, trying to keep the whole world calm and ordered to protect my son and those around him—an impossible task. When one of these emotional mines suddenly detonates, I throw myself on the blast, absorbing as much of it as I can to shield others, especially my other children, from the fallout. I stand guard like this day after day, month after month, year after year. I walk around with my breath slightly held, feeling like we’re always about to cross a busy street.
Sometimes I handle things well; other times I lose my temper and lash back at my son. Those are the darkest days, the weeping days. I’m supposed to be his comfort and help, but this job is so much bigger than me. I run out of energy. I run out of strength. I run out of patience. I come up short again and again and again.
An invisible disability
One of the hardest things about our family’s disability is that you can’t see it; you can only see what spirals out of it.
If my son walked into the room with two broken legs, no one would be angry with him for not being able to walk; they would offer to help him. Our child’s symptoms are visible, but the disability itself is not. His weakness pushes people away when he needs their help most. It’s hard to understand (even for my husband and me) that he needs extra grace and compassion when he’s lashing out in anger. He’s usually melting down because he’s anxious or afraid or overwhelmed.
This beautiful boy is a kind and tender little soul, always willing to share or help or stand up for someone who needs it. He never wants me to kill a spider or throw away a drawing. He’s off-the-charts smart, and he longs to please his father and me. He sees the world in a marvelous and interesting way, noticing details I would always miss. He uses crazy-big words and sees patterns in math that I never would.
That same unique wiring of his brain also makes him quick to spring into a fight; he perceives threats everywhere, even where there are none. And so this sweet little boy can suddenly explode with adrenaline and anger and leave us running for cover in our own home.
The road God has placed us on feels unbearably hard to walk some days.
My heart’s longing is to give you a glimpse into the pain the mother of a child like mine quietly carries around with her. You probably won’t see it. She has to keep functioning, after all. She may have other children to protect and care for. She can’t walk around passing out handfuls of sorrow, so chances are you don’t know how she’s quietly suffering.
God’s Word tells us we are to “rejoice with those who rejoice and weep with those who weep.” It tells us to “bear one another’s burdens, and so fulfill the law of Christ.”
How can you help bear a burden like this one? It’s not as complicated as you might think.
Eyes to see, ears to hear
- See her. A few years ago, my neighbor Lucia stopped in front of our house to chat. She had heard from her husband about our son and his struggles. Lucia told me that she had worked with special needs kids at our local school and had some small idea of what I was going through. “If you need anything—if I can give you a break any time—please let me know. I really mean it.” Instantly, I was choking back hot tears in my driveway. I didn’t realize how much I needed someone to know what I was going through—to just see me standing here in this hard, hard place.
- Hear her. Ask her how she’s doing. Ask her how her child is doing. Ask her what it’s like to live with Asperger’s Syndrome or whatever lives in her house. Just give her an opportunity to express how she’s feeling, and even if she doesn’t want to share, she’ll know you cared enough to ask.
- Encourage her. Point out the good things you see in her child. Tell her something you’ve noticed that she does well as a mother. And do think carefully before offering advice. She’s probably read stacks of books and articles and consulted with more professionals that you can imagine. She doesn’t expect you to solve her problems; caring about them is enough.
- Relieve her. I’ve found that it’s all too easy to turn away general offers, but if someone says, “I have a meal for you. Could I bring it by this afternoon or tomorrow?” it feels like my load is suddenly lighter. Another friend watches my baby once a week so I can go for a walk by myself. I’m so grateful for how God shows his love to me through kind friends!
- Pray for her. If there’s only one thing you do for your friend, let it be this one. Ask her how you can pray for her, and then pray! I have no doubt that the prayers of our family and friends have held us up many, many days. More than that, I believe these prayers are part of what God uses to actually shape the future of our child and our family. This could look a thousand different ways. You could pray during a certain day of the week for her family. You could text her or e-mail her or handwrite prayers and drop them in the mail. You could write their family’s name on an index card and put it on your fridge or in your Bible. Please, please, please pray.
One of the most vital ways the Lord Jesus shows his love to us is through one another, his very body. We are united to him and to each other by his Spirit, and each of us has something life-giving to share. Life in this world is full of hardship, and we need one another in very real and urgent ways. As I walk through these difficult days and remember that Jesus promised never to leave me or forsake me, I’m grateful that one of the ways He cares for me is through people—messy, imperfect, trying-their-best people, just like me. Sometimes we feel lonely, but in Christ we never stand alone.
Can you relate to my story? Are you struggling to hold on to hope? How has God shown his faithfulness to you?