An Aching Heart for a Disabled Sister

In what seemed like a rare event, both kids were sleeping at the same time, and we were at my parent’s house.

As my mom was available to babysit, I grabbed the opportunity to pick up my sister from her day program and to take her out to get her hair cut.

As I pulled into the parking lot of her day program at 2 pm sharp, through the barely cracked window of my car I heard a distinctive voice, and one I was all too familiar with: “Emmmmy!” My sister screeched my name. I scanned the parking lot and just outside the building, but couldn’t see my sister anywhere. I chuckled to myself as I realized that she had spotted and called out to me from inside the building. I smiled. She sounded like she was in a good mood, and that was of utmost importance before going for a hair cut.

After getting scolded by the worker for running out of the building, she hurriedly propelled herself into the passenger seat of my car. As she set down her lunch box and buckled her seat belt, she called out to the worker “I love you! Good weekend! Bye!” And we were off. Comments were exchanged about our day. She reported that she had watched “Bugs Bunny” at her day program, and I giggled at the thought. I reported that Josh and Rachel were with Mom, taking naps. She reported that her leg hurt. And then she asked when we would be leaving my parent’s house.

“Tomorrow” I said, sort of tentatively, as how long we were staying at my parents’ was always a hot topic with her. “We’re going to spend the night tonight! Won’t that be fun?”

Her mood tanked immediately. I had been carefully navigating our conversation to maintain her good mood as long as possible. I should have dodged her last question. She became agitated. She crossed her arms and stomped her foot. “NO Emmy! Don’t like it!” I was internally rolling my eyes. I knew she hated sharing our parent’s house with us –that is, her siblings and their families. I knew she hated all the extra noise that a toddler and a baby brought into her quiet environment. But she would have to get over it. After all, she wasn’t an only child. We couldn’t stay away forever.

Janny,” I said in the kindest voice I could muster, “It’ll be fun! It’ll be just like Christmas when we always stay overnight!”

I made a mental wager that my optimism might positively influence her, but I lost. Her agitation spiked and she lost all control. “NOOO EMMY! HATE IT! She screamed at the top of her lungs and hit the dashboard and door with her arms. She continued to scream and throw herself around as much as one could while being restrained by a seat belt. Thank goodness for seat belts.

I was beginning to doubt we could pull off a hair cut after all. It’s always a touch and go experience, although the last five or six haircuts had gone off without a hitch. But today the task seemed more precarious than usual. Her outburst was pretty extreme. “Fine Janny,” I began to warn her. “If you can’t pull it together, then we’re just going to have to go home.”

She immediately burst into tears while simultaneously continuing to scream at me. I handed her a tissue. “Janny. Calm down. It’s okay. But you can’t talk to me like that. You need to choose to be kind, even when you feel like being nasty. Because you can. You always have a choice.”

“I CAN’T EMMY! I CAN’T!… I CAN’T!” Her anger exploded once again. She was reaching the point in which she could quickly escalate into becoming dangerous. She had at times tried to grab my steering wheel, transmission, or clutch. Or, escape the moving car we were riding in (thanks to the child lock button that had never been an issue).

I felt defeated “Have it your way then, Janny. We’re going home right now.” I intentionally drove past the local Supercuts as she continued to cry. But then she dried up her tears and said “Okay Emmy. Okay, okay okay. Better now. Please, hair cut?”

“Can you tell me you’re sorry?” I asked.

“I’m sorry.”

“Alright, I’ll turn around, but no more yelling, screaming or crying. You need to be nice.”

I made a u-turn at the next light, silently wondering if giving her another chance was going to be a big mistake.  We pulled up at the Supercuts building and parked. I began coaching her as we got out of the car. “Okay Janny. When we go inside, don’t run past the person at the cashier and back to where people are getting their hair cut. Sit down right away until they call your name.”

“Okay Emmy.”

We walked inside and I was relieved to see that there was only one other person getting a hair cut, an older man. And there were no people sitting in the waiting area. The less people there were, the better she would do. She sat down as I had instructed her and I felt encouraged. It was always a huge temptation for her to want to run past the cashier and give some unknowing hairdresser a huge bear hug from behind while they happened to wielding sharp scissors.

A young, friendly looking hairdresser called Janny’s name, and we started to walk back toward the hairdresser’s chair. Suddenly something shifted in Janny’s demeanor, and not for the better. I immediately began coaching her. “Here Janny, come with me! This is where you’ll sit!” I pointed to the chair. I breathed a sigh of relief when she cautiously sat down.

I never knew if it was the chair, or walking to the chair, or meeting a new hairdresser, or what. But getting Janny into that chair was always a little difficult. Sometimes she had no qualms about it.

Today was different. Before the hairdresser could even get a word in to discuss hair cuts, Janny suddenly became belligerent in a way I hadn’t seen before. “NOOO!” She screamed. “DON’T TOUCH ME!” She yelled. At that moment you wouldn’t have guessed that she had been begging my mom to have me take her for a hair cut for the past 3 weeks. She stomped her feet repeatedly and scowled at me from behind crossed arms. I internally gasped when she proceeded to hold up her fists, as if she were going to deliver a punch, to both the little young hairdresser and to me. “That’s new,” I thought, wondering where on earth she had learned that behavior from. That warranted some serious intervention: “Janny, if you don’t cut it out right now, I threatened in the calmest voice I could find, “then we’re going to leave immediately.”

She responded by slapping the hairdresser’s hand, which was touching her chair.

That was the last straw. I remained calm, but let her know she had lost her chance for a hair cut. “Out of the chair, Janny. Right now. We’re leaving. Get into the car.” Of course she struggled and resisted and refused to go willingly.

I hated these scenes. I avoided them like the plague. But there was no avoiding it now. She screamed at the top of her lungs as the other customer and hairdresser looked at us in horror. “NOOOOOO! DON’T WANT TO EMMY!!!” She stood up and I moved behind her to ensure that she would not attempt to resist me further. I didn’t want to play a cat and mouse game with her as she ran around the shop, all the while yelling at me, bumping into other people, and potentially throwing various salon items. I desperately just wanted to leave. As she screamed her way out of the building, I turned my head and quickly told the hairdresser that I was sorry and that maybe we’d try again on another day. Thankfully she looked sympathetic and graciously said “It’s okay!”

We exited the building, but then it got worse. Janny wouldn’t budge and screamed with everything inside her: “EMMY I HATE YOU!!!” I’m pretty sure you could have heard her in the next town over. I wasn’t putting up with her shenanigans anymore. But I would remain calm and keep my voice down. “Get into the car. Right NOW. You may NOT talk to me like that.”

Another person was getting out of their car next to mine and I prayed that Janny would just choose to get into my car. Otherwise it would be more screaming from her. And I hated having bystanders around, who would no doubt be wondering if they needed to call 911, or CPS, or just feel disturbed for the rest of the day. Thankfully, Janny got into the car and slammed the door with gusto.

As we left the parking lot, her rage broke and she began to sob. “Emmy mean! Emmy rude!” She protested, but more weakly this time through her tears. I assured her that I had been anything but rude. She continued to sob. The tension I had been feeling also lessened. I looked over and saw her grown-out bangs, which were too long now and drooping into her eyes. I began to think about all the days before this one that she had pestered my mom, asking “Emmy take me hair cut?” And all the times she had lost the very thing she had looked forward to because of her often rotten behavior.

And my heart began to ache for her.

Because I knew that she either could not or would not control her rage and anger.

And yet, I still couldn’t reward it.

And so the paradox that she had lived in for years continued. Of lashing out at those she loves most. Of sabotaging the most exciting event of her week. Of hurting herself when she was mad at another. Of choosing to respond in a behavior that just got her in more trouble. I felt helpless and sad about a situation that so many had sought to change over the years but who’s efforts had produced little or no progress.

Chris Tomlin’s song “Jesus Loves Me” came on the radio and I heard the words:

“I stepped out of the dark, and into the light, when He called my name.
I couldn’t run, couldn’t run from His presence
I couldn’t run, couldn’t run from His arms.”

And in that moment, I was immediately transfixed by God’s love for Janny. Some day, when the Lord calls her home, she will run into His presence and into His arms, and there she will remain for as long as she wants. She will be perfectly loved. There will be no more anger or screaming or rage. She will be complete, and “disabled” will no longer signify her. She will have perfect peace.

I wept as I thought about this. My efforts to conceal my tears failed, but Janny, ever so compassionate, started to cry again and wanted to hold my hand. It was as if the fiasco at Supercuts had never happened. After a little while we both dried up our tears and I turned up the radio.

Despite the trauma of the past hour, somehow we both enjoyed the rest of the drive home.

There has been little in my sister’s behavior that has changed over the years. And there may be little that changes in the future. She may even worsen over time. But this is not the end, the finale. As hard as things are, there are always mercies — like God giving me a little glimpse into eternity when I was tempted to despair about this finite season with my sister. We will continue to pray and ask God for healing of this beloved sister of mine. But if He chooses not to, we will not lose hope.

1 Peter 1:3-9 (ESV)

“Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil or fade. This inheritance is kept in heaven for you, who through faith are shielded by God’s power until the coming of the salvation that is ready to be revealed in the last time. In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed. Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the end result of your faith, the salvation of your souls.”

Taken in 2012, just after a successful hair cutting outting.

Taken in 2013, just after a successful hair cutting outing.




Filed under Disabilities

3 responses to “An Aching Heart for a Disabled Sister

  1. I don’t know what the future hold for my Clara but I pray that Camille will be a shining, steadfast light of peace and hope just like you are for your sister!!

  2. Anonymous

    You are a wonderful sister even though my son has different issues then your sister my daughter is good with him you guys are special people to deal with your siblings and they are lucky to have you.

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