I jumped up, out of bed to a thumping sound and screaming. I grabbed my phone for light and looked at the time, trying to quickly move from our room to the one adjoining it.
Just after 3:00 AM.
I grabbed Cailyn from her bed, along with a blanket and pillow. I held her in my arms, laid her head on my shoulder, and whispered to her as we walked carefully down the stairs.
“It’s okay sweetie. Daddy has you. We’ll go downstairs and lay down and go back to sleep.”
I changed my five-year old’s diaper, held her for a bit longer, placed her on the mattress we left downstairs just for her, patted her back and sang softly. Finally, I began to back away and move slowly up the stairs, down the hall and back to my bedroom. Just as I placed my hand on the doorknob, I heard the sound of soft whining…then loud crying…then screaming.
I would ultimately lay downstairs with Cailyn, mostly awake, until my alarm for work went off at 5:30 AM.
This was just another typical morning in a multi-year, sleep-deprived pattern that had Amber and I alternating who would get to sleep and who wouldn’t.
The first time I decided to take a transfer at work, I had a lot of trepidation. What if I didn’t like the new job? What if I didn’t like the boss? I went to my former manager and mentor to share my concerns and get advice. His words stuck with me.
“A man can do just about anything for two years.” he opined.
The two years referred to the literal amount of time I’d need to be in the position, before I could apply for something different. The philosophy was much more profound: we can endure a surprising amount of time-bound, finite pain. Conversely, placing no limits on duration can take a small amount of suffering and turn it into emotional torture.
The most cliché greeting for the parent of a newborn is often “How are you sleeping?” Most everyone with children understands the value of a night of uninterrupted sleep. They also understand that it’s only temporary and that they will eventually move past it and into a more normal pattern.
That wasn’t happening with us and the prospect of a lifelong struggle over basic needs was a frightening prospect. Cailyn was now five-years old and she wasn’t sleeping. She wasn’t potty-trained. When she was sad, she couldn’t even describe why. This tyrannical carousel, a frustrating day played on repeat with no promise of ending, turned inconvenience into torture and colored the lens we used to see the world.
In that respect, we’re more similar to our daughter than we realized.
Cailyn doesn’t understand time…only cause and effect. She knows lunch comes after waking up, breakfast, her shower, and changing her clothes. Therefore, logically, she believes she can do all of those things at 5:00 AM and then go to the Mexican restaurant for her favorite meal. Unfortunately, the restaurant doesn’t open until 11:00.
We tried a stoplight alarm clock to teach her the cause and effect of time. “Light turns green THEN chips and salsa” we’d bargain. She’d ask dozens of times, each more and more impatient…each closer to a violent meltdown. The breakthrough didn’t happen until the school recommended an app that shows a visual representation of the time remaining and time elapsed, so that Cailyn could see EXACTLY how much time she had left until her wait was over.
If we just ask her to wait, she gets upset immediately. When we tell her to wait until the light turns green, she get’s impatient and upset after about a half hour. When we show her how much time is left, she can last much longer. Neither the conditions (wait) nor the promise has changed…only her perspective has.
Looking at God’s plan from the lens of a father, I begin to see my own impatience on full display. My third lesson while battling with my daughter’s battle with Autism is that His promises and conditions are the same but that I had to change my perspective. I needed to recognize that my TODAY isn’t my TOMORROW.
Potty training a child with severe Autism is something I wouldn’t wish on an enemy. For years we tried, sometimes with limited success and others a resounding thud. The process makes it frightening to walk into a room. I’ve seen Cailyn sitting half-naked in the middle of a laminate floor, in the middle of her feces. I’ve walked into a room, where she’s wiped it all over the walls like a cave painting. I’ve smelled unholy things on her breath that defy description.
Even after we relented and gave up, she decided she liked doing it and continued to play in her diaper. There was a time where we had to literally follow her from room to room, to correct her before she did it. This went on and on for months. Occasionally, we would step away for a minute or miss her. I remember walking into her room and smelling it immediately. I would find brown streaks on her walls and face. Once, I was at the end of my rope and just screamed.
“CAILYN NO! NO PLAYING WITH POOP! I’VE HAD IT! I CAN’T DO THIS ANYMORE!”
I hit her door, which slammed shut violently and hurt my hand. I shook my hand for a moment when I heard the sound of Cailyn laughing. She found my reaction so funny that she could barely stand, she could barely breathe. She didn’t understand our anger or desperation. She just found the reaction hysterical. That’s how disconnected our communication was.
After a falling out with the Autism school Cailyn was attending, we were right in the middle of this disconnection and trying to find somewhere for her to attend. Amber was opposed to public school, convinced they couldn’t meet her particular needs. Door after door slammed in our faces, when I finally caught the signs.
“Amber,” I said “we need to give [our local public school] a try. They’ve contacted us about speaking to the special education teachers multiple times and touring the classroom. Other doors have been slammed in our face and I know I can break through them if I try hard enough, but every time this happens it feels like God is opening a window for us…and maybe we should give it a shot.”
So we skeptically (and tearfully) sent our nonverbal child off at public school for the first time, fearful of all of the bad things that could happen…things she couldn’t tell us. That afternoon, we ran to her backpack to read the notes from that first day of school. When we opened it, our jaws fell to the floor.
“Send her in underwear tomorrow, if you’re comfortable. We’re willing to be consistent and try if you are.” the note read.
Cailyn was using the toilet by herself within the month.
Most everyone knows the famous wilderness story of Joshua and the battle of Jericho. When I read the story, I think about it differently. I imagine the story from the perspective of a man, who only knew wilderness. I’m currently (slightly) under 40, the number of years the Israelites wandered. Therefore, leading up to to Jericho, my last few days would’ve looked something like this…
- Moses, the only leader I’ve ever known, dies.
- New guy immediately performs “minor surgery” on all the men.
- Manna, the only food I’ve ever known, stops falling from the sky.
- New guy tells me I’m going to have to do WHAT around those giant walls?
The glory of the story is at the end, where the walls came down. All I can think about is lap seven. I’m a dude, who has been limping for days around this wall. People have probably gathered to watch and laugh at me from their luxury suites atop that wall. I’d probably be elbowing the guy next to me and complaining…
“Hey man, what’s your take on Josh? Do you see any cracks, yet? These walls are still looking pretty healthy to me. Nope…no structural damage to wall. Hey, is your stomach a little off too? Thirty-six years of manna didn’t prepare me for digesting corn. By the way, should I still be THIS swollen?”
What I’m trying to say is that there is a lot of uncertainty around this event. There is a lot of pain. There are 40 years of walking and a covenant with an entire lineage hinging on the outcome of one more lap…and they’ve got NOTHING.
This is not a unique lesson in the Bible. In 1 Kings God promised rain but Elisha’s servant had to climb up a mountain seven times to check, before there was a cloud to be seen. In 2 Kings, Naaman was told to wash in the Jordan river seven times to be healed of leprosy. If it were me, I would’ve expected these miracle divided up into sevenths: A cloud that grows bigger every time I climb to the summit, a wound that disappears with every bath, or a wall that cracks and crumbles into more pieces with every lap.
Faith, it seems, doesn’t work that way. God’s promises aren’t always a dangling carrot that we can see, to keep us moving forward. Our darkest moments, biggest doubts, and most pain often come in that last lap. When God promises that all things will work together for our good, He’s not saying that we can see that good coming from a distance. He’s telling us that we have a promise that our TODAY isn’t our TOMORROW and there is yet another lap up ahead.
The hardest revelation in my third lesson has been that our tomorrow isn’t always here on Earth. It’s apparent to me that God doesn’t view this life as the destination, but a way point on the journey; a training and recruiting ground. Often, we have to look for our promise to be fulfilled in a different life…by a God, who is playing chess on our checkerboard.
Paul, the man who wrote much of the New Testament, said he was tormented by a messenger from Satan and begged for this affliction to be taken from him. God declined, His rationale being that His strength would be made perfect in Paul’s weakness. When I read this, I see a man who needed to need God; one whose path to his eternal best outcome (his tomorrow) could only be achieved through Earthly pain and the grace that accompanies it.
In God’s message to the Church at Smyrna, He acknowledges their suffering and poverty. He tells them not to be afraid, because they are about to be imprisoned and will suffer…even facing death. His only promise is that their tomorrow would include the crown of life. He signed the letter from the One who was dead and now is alive…the evidence that His promise is possible and extends to those who suffer faithfully in this life.
I’ve come to accept (and often resent) that I may never truly get to experience the promise of Cailyn’s restoration here. The Bible tells me that God is not ignorant to our sorrow but that He collects our tears in bottles and records them in His book. Some days it would seem to take a lot more than bottles. On those days, I look back to our promise: Cailyn was given to Amber and I for a purpose. Before she was ever named, she was known. My hope is for tomorrow; That someday, the morning will swing all the Earthly wrongs to right and I will get to know my daughter as God always has. I pray that I can look her in the eyes with the confidence that I’ve done something to make her proud in the only realm that matters.
Solomon, the purported richest and wisest man in history once bemoaned the meaningless he observed in attempting to enjoy this life, suggesting seeking pleasure was futile because everyone ends up dead, everything repeats itself, and all of our progress is like “chasing the wind.” Even a man who had everything struggled with the purpose in his pain.
I’ve seen the same symptoms first-hand in myself and others, who have talked to me. Everyone experiences pain and suffering. It’s neither greater nor less than ours, only different and relative. I’ve talked to people who suffer in finances, in their marriage, with health issues, and addictions. The bottom line is that we all experience time in the wilderness. We all need strength to move to the next lap.
Only through careful reflection, journaling, and sharing have I begun to rediscover my altars, ebbs and flows in life; mountains and valleys bringing periods of strength and growth, respectively. Solomon (along with The Byrds) would later observe that there are seasons littered throughout these cycles of our lives. Things here will never be perfect but we have the hope that they change. Endure and grow in the bad, thank God and build strength in the good, and put your effort into eternal things that matter…because that alone is the hope that your TODAY is not your TOMORROW.
My wilderness had already taught me that God is always at work and that He has a purpose for your pain. When I believe that the process is short but the promise is eternal, I am given strength to wander another day with hope. I may be on my seventh lap.
I pray that I’ve shared that hope with you.