“MONDAY NO SCHOOL! ALL DONE!”
It was over an hour past her bedtime but Cailyn was wide awake, screaming and hitting herself in the face. The next morning, we were going to send her back to school after an extended weekend. She didn’t want to go and decided to engage in a battle of wills. I tried speaking calmly, fruitlessly working through clapping and breathing exercises. She flailed around violently and battered the sides of her head as she huffed and puffed, mocking my breaths. Next, I took her headphones away as incentive. I told her she could have them when she was calm. We tried counting backwards to no avail. She began scratching and ripping at her ears. I got close and tried to provide pressure by giving her a hug. She had an overpowering smell of body odor and was drenched in her own sweat. She dug her chin and nose into me and then slammed her head against my shoulder. I was exhausted. Out of options, I grabbed both of her hands and held them against her side to keep her from doing any more damage. With tears in her eyes, scratches up and down her face, and a now bloody quivering lip, she got an inch from my eyes and let out a hybrid growl scream reminiscent of a modern day exorcism.
“MONDAY NO SCHOOL! BE CALM! 5-4-3-2-1! HEADPHONES!”
After a few more minutes, we were both exhausted. She finally relented and went to bed. I set my alarm to wake up just three hours later, when I would need to wake up in the middle of the night to take her to the bathroom. Unfortunately, I never needed it. My adrenaline, thoughts, and tears conspired to ensure that I wouldn’t fall asleep. This is not an isolated incident…it was an emerging pattern.
The bedtime fight is one of many new routines, in a season of escalating anxiety and violence in Cailyn. Overnight, she went from loving church to refusing to go. We got called out of service several straight weeks due to her meltdowns until we relented. Amber and I started alternating services with Dalton, each week. We now go nearly everywhere separately because we can’t count on being able to stay. Cailyn melts down at the mere mention of school and screams and kicks at us when we try to take her out of the car to go into the store. She loves car rides (especially when Christmas lights were out) and sometimes forces us to drive around for over an hour, but violently kicks at the dash and windows when we tried to take her home. I had to try to invent ways back ways to sneak her into the neighborhood without her realizing it. One time, she threw such a fit that she kicked my car into neutral in an effort to keep me from going a direction she didn’t want. In the past six months, she’s broken multiple iPads, pulled out her own teeth, eaten feces, and generally tormented nearly everyone in our house.
We haven’t just been sitting back and taking it. Cailyn had been on a medication that seemed to help for around a year. When things deteriorated, the doctor increased the dosage, tried another medication, then increased the dosage of that one. Since they stopped working and would assuredly have long-term side effects, we began to ween her off both. We’ve been to multiple specialists, one of which had to call assistants in to restrain Cailyn during testing. Completely baffled, they recommended immediate behavioral intervention and sent us home with a sedative used in surgery “for emergencies.” Amber was called into the school to discuss the new behavioral issues and came home with instructions to send Cailyn a helmet to wear because they were afraid she’d concuss herself. We recently received approval for respite care, which we viewed as a silver lining. Unfortunately Amber has tried for six months to find an assistant caregiver but every lead falls through. Not even so-called “experts” felt equipped to handle her behavior.
Almost overnight, we entered the longest, furthest, most painful behavioral regression in our daughter’s history. To this day, we’re still searching desperately for the source and solution.
My own personal slide was far less sudden. We recently built a house with a special room for Cailyn, thinking that all of our problems would be solved. Initially, it seemed to work. Her behavior improved and she enjoyed being home. With everything clicking on all cylinders, I grew comfortable in a season of relative ease in our lives and was certain that we’d turned a corner in our battle. When things turned so suddenly and our wheels began spinning again, I felt helpless and out-of-control…so I hid.
It started simply. I decided not to take Cailyn out into public, since it would exacerbate her behavior and resulted in stares and ridicule. Next, I began avoiding Cailyn’s room. I knew if I went in, she’d ask for something. If she asked for something, I might have to say “no.” When she was being calm, it was easier to just stay away and be grateful for a moment of peace. I told myself it was best for everyone. All of the sudden, our family was bored and trapped. Almost all of our activities split us apart and someone was always left behind. Self-pity began to fester in my mind. I couldn’t break from it, so I began obsessing over mindless games on my phone. If I honed my focus just right, everything else would melt away…until I was snapped back into reality by Cailyn screaming in the other room. I stopped feeling empathy for her. I was left with only resentment and anger. Her cries were pulling my mind back into a life I no longer desired.
At the same time, health problems resurfaced and I feared my ulcer was returning, so I wasn’t eating well. I couldn’t turn my mind off long enough to sleep, so I started staying up late and falling asleep to television shows, which I used as another life escape. There were times I would intentionally come back later from work because I didn’t want to have to walk through the door of my own home. I was ashamed and couldn’t talk about it with others. Nobody would understand or be able to help anyway so I avoided meaningful interaction with anyone. I faked interactions when forced, but isolated myself in every way imaginable. Outside of a few fleeting moments with my son or wife, there was nothing I truly enjoyed or looked forward to. I was alone, in hiding, and barricading the door.
It’s not a huge jump from “hiding from life” to “wanting to escape.” I began looking at real estate around the country and fantasized that it might somehow change our situation. I looked into turning Cailyn over to a full-time residency program. This proved too expensive and too wasn’t a realistic option for Amber, who was still thinking empathetically (and rationally) about Cailyn’s need for us. The guilt of being willing to part with my child overwhelmed me, only surpassed by the realization that I wasn’t enough for her. With all other avenues seemingly closed, I began just wishing it all would end.
While my distance wasn’t beyond notice, Amber wasn’t aware of the depth to which I’d sunk. Admitting I had lost control of my own mind was emasculating so I even hid it from her. Instead, I trusted the internet for answers, taking tests and reading the stories of others to determine whether I needed intervention and to seek strategies to begin a climb back up. I dialed a helpline several times and hung up before anyone could answer. Like a medieval superstition, I was afraid of admitting it aloud…even to myself. I feared the stigma, the judgement, and the pity. As a control freak and perfectionist, I couldn’t imagine accepting someone’s pity. I tried to convince myself it was a phase I’d eventually beat…until finally I couldn’t keep it hidden. One evening, it all flooded to the surface when I snapped at Amber. Now exposed, I knew I had to explain. I approached her with eyes red and full of tears.
“I think I have a problem.”
Transparency is easy when unveiling a conquered past. Sharing comes natural in a flattering light and at the perfect angle. Social media is filled with families on Easter, staged for a selfie in their Sunday best. You might not recognize those same people if you saw them running late and fighting just moments earlier. People always tell me I’m an amazing father but they don’t live with me when I’m tired. You see the “I’ve got this” version of myself on WordPress, weeks later. You never get a real glimpse into the frustration, doubt, and despair. I call this version the “this could be forever” me. This is the side that goes to bed, wondering if I’m just a hamster on a wheel, doomed to this cage until death. That is why I hide. I won’t share a lie and can’t stomach the public failure. Every struggle needs a victory; each mistake, an accompanying lesson. When I stopped winning, I stopped sharing.
Little did I realize, I’d been given my lifeline six months prior. It was a tiny breadcrumb I left myself from what I considered to be the height of our journey. On one particularly bad day, I found that breadcrumb while sitting around the house, waiting on some contractors to finish up work. Bored, I went back and started reading a journal entry I made in the previous year. I had titled it “Where is God when I’m suffering?” and it contained three “wilderness” lessons. I started to research and document these lessons, convinced I needed to share them with others struggling through difficult periods in their lives. When new priorities and comfort emerged, I let that mission die and never got around to finishing it. As I read this journal entry, it was now from the lens of the very people I’d intended to help. It was as if I was reaching out to myself; providing a mountaintop perspective of my current season…and maybe the way to climb again.
Once the workers finished, I went down to examine the final product. The foreman asked “Do you mind if I ask what your daughter’s situation is?” They had all heard Cailyn throwing a fit, as Amber ushered her off to school so it was apparent that there was a problem. I told him the situation and he explained his empathy. He recently encountered a health situation with his son which, although mostly resolved, still left their family with challenges. In that moment, I saw his pain and so I shared what was immediately on the top of my mind…my three lessons. We chatted for nearly a half hour and, by the end of our discussion he had tears in his eyes. He reached out and grabbed my hand to shake it.
“I am so glad I met you. Thank you for the encouragement.”
As they left the house, I texted Amber. I felt a sense of joy that I was able to help someone. I also felt a renewed sense of hope. In the process of trying to convince him that there was a purpose in his pain, I had somehow flipped a switch in my own mind and began to see my own. Since that first opportunity, I’ve sought out and had similar discussions with at least a dozen other people. Each time, it becomes easier. Each time it lifts my spirit further. I didn’t understand the mechanisms behind it until Amber shared a sermon based on a story in the fourth chapter of 2 Kings.
In the story, a woman had lost her husband and everything she owned except for her sons and a small bit of oil. When she asked the prophet Elisha for help, he asked her to gather up empty vessels from her neighbors, take what little she had and pour into them until they were all full. This continued until there were no empty left. The symbolism is that we don’t need to be whole in order to pour into the lives of others. In fact, it may often be the act of sharing from our emptiness that leaves both vessels full.
I share this all from a perspective, with which I never thought I’d identify. One I often boasted of not being able to understand: Depression.
With the renewed media attention on the subject, I felt compelled to go one step beyond just sharing my hope. I feel like I needed to be transparent in my doubt, which is made more difficult by the fact that I don’t yet have an ultimate victory story to share. Cailyn’s behavior is as bad as it’s ever been, with no immediate end in sight. As I look back at the bottom from what you might describe as foothills, I can only provide some basic direction.
If you’re struggling, remember that everyone has a story. Don’t pretend. Don’t hide. You have something to offer to others and others have something to offer you. Seek casual opportunities to talk and slowly share your experiences. You’ll be shocked how often others are struggling and will reciprocate. Journal any small victories, lessons, or positive things in your life and use it for reflection in the “lean” times. You don’t have to reveal everything to be authentic and you don’t have to be a sage to impart wisdom. In a world where everyone is their own brand, I’m finding that transparency is one of the only meaningful broadcasts left. If you can provide support to others, that will be the tide that lifts your ship as well.
If you’re doing well, your responsibility is greater. Posting a phone number to call for help isn’t enough. Every time you reply “Good. You?” when someone asks “How’s it going?” you are complicit in their lie. I’m not suggesting that you host a deep dive with every person you meet but you should be exploring the lives of of people, for whom you genuinely care. Make it just a little harder for friends to stay in the shadows. At worst, you’re strengthening the bond with another human. You may just be the last lifeline for those, who choose to hide.