When Life is Endlessly Hard

Once, my sister asked me to watch her son while she showered. I remember looking at my nephew and thinking, “one of us is going to die in the next 20 minutes.” At the time I had absolutely no idea what to do with a kid. And I had no desire to know.

But after 10 years of marriage, my husband and I had our first son and I had no choice but to know – how to nurse, how to swaddle, how to change a diaper, how to get by on less sleep than ever in my previous 33 years of life.

I quickly became an expert at one-armed living – holding Findlay on one hip while cleaning and cooking with my free arm. (I’m trying to rack my brain for other one-armed tasks I must have completed, but all I can recall doing for that that first year was cooking and cleaning.) I was a professional at removing stains from clothing and carpets. There was that one calamity where Findlay and I both ended up with his pee, poop, and vomit on both of us. But an hour later? Our clothes were body-fluid free and clean. I was nothing if not efficient.

In that small house nestled among the snowy birch trees outside of Fairbanks, Alaska, it didn’t take long to feel a bit restless. When temperatures reach – and remain at – thirty degrees below zero, you don’t leave home if you don’t need to. With my military husband away for days or weeks at a time, that meant that most of those 4-hour-long winter days (and 20-hour winter nights) were spent doing little more than cleaning up pooptastrophes (a clever term trademarked by Aunt Michelle) and meal prep, meal time, and meal cleanup. I loved being a mom, I really and absolutely did. But I also felt as if the first 365 days were on repeat.

Apparently I looked pretty haggard trying to wrangle Findlay at church one frigid morning. The pastor told me very helpfully that I looked tired. A fellow mama stated the obvious: “Don’t fret. It won’t always be this way. This too shall pass.” Except it wasn’t obvious to me. It was an epiphany. Until that moment I had felt bogged down, neck-deep, in a poop swamp from which I did not expect to ever be rescued. But she was right; one day Findlay would potty train and eat like a normal person I would no longer spend endless hours at the utility sink spot-treating innumerable Rorschach-like stains on his little onesies.

I held on to the hope that “this too shall pass” and was better able to enjoy each sweet moment as Findlay’s Mama, rather than feel like his everlasting – and (I’ll admit it) slightly bitter – servant.

In 2016, when Findlay was 3, we adopted our second son, also 3 years old, from China. We knew he was born with a bowel issue, but his file from the orphanage said that that had been corrected with surgery when he was a week old. His file was thin and left a lot unknown, but no other certain diagnoses were indicated.

When Sean and I flew to Guangdong to meet Coen for the first time, we were re-directed from the orphanage to the hospital where he’d been admitted for vomiting blood. (We learned later that it was his 10th hospitalization, the third for vomiting blood.) I picked him up from out of the hospital bed and held his tiny, malnourished, weary body to mine. I cried – for finally getting to meet this child we’d been trying to bring home for months, and for how pathetic a state he was in. Coen was completely emotionless.

Sean and I pushed Coen in a stroller around the smog-filled, bustling, fascinating back allies, markets, and malls of Guangdong for 2 weeks as the adoption was finalized at the American consulate. We quickly discovered that Coen could not walk, could not talk, was not potty trained, and was unable to chew since he had never been given food – only liquids. All he wanted to do was lie on his left side and suck on or play intricate games with his fingers. The best we could figure, he’d been left to lie in a crib his entire life. That’s why none of the toys or books we brought interested him, and why his head was shockingly misshapen – the left side was completely flat, and the right side of his skull was pushed out passed his ear in an enormous bulge. He made very little eye contact with us and resisted hugs and kisses, probably because they were utterly foreign to him. He screamed nearly every night for no less than 2 hours. Was he afraid of us? Did he have night terrors? There was no way to know what caused his distress. Nothing soothed him. The night screams lasted for 8 eternal, infernal months.

We brought Coen home on December 9th, 2016. Three months later, Coen (along with myself) was life-flighted from Fairbanks to Seattle where we spent a week in isolation for an exploded lymph node in his chin. We discovered that he had tuberculous peripheral lymphadenopathy, a non-contagious form of tuberculosis, which required 6 months of home visits from public health nurses to administer his antibiotic cocktail.

Within a week of returning from Seattle, we were forced to move from our beloved home in Fairbanks, Alaska, to Phoenix, Arizona, for Coen’s medical care. He needed to see specialists in 12 fields, most of which were unavailable in remote Alaska: neurology, otolaryngology, gastroenterology, cardiology, infectious disease, ophthalmology, physical therapy, occupational therapy, speech therapy, feeding therapy, orthopedics, and developmental pediatrics. Within the first year of welcoming Coen into our family, he had over 100 medical appointments and 3 surgeries.

As I write this (spring 2019), Coen has been my son for exactly 2.5 years. In that time he has learned how to walk (and run and jump and climb!), dress and undress himself, put on his socks and shoes, use several ASL signs appropriately, and follow simple directions. He rarely screams in the night any longer, and instead is prone to laughing and squealing happily when he does wake up at 3AM (which is often). God be praised for all of Coen’s amazing progress!

And yet. The pessimist in me cannot overlook the progress still to be made. Coen has been diagnosed with low-functioning autism, and we’re currently awaiting results of blood tests to see if he also has chromosomal abnormalities contributing to his global delays. He remains non-verbal. Despite being in feeding therapy twice a week for the past 2 years, he still cannot chew; he is on a dysphagia (pureed and liquid) diet. Cleaning up him, the table, and the floor after mealtime is not unlike the massive cleanup efforts needed for an infant just learning how to eat. He is not potty trained, despite my best efforts. It could be that the bowel issue he was born with – anal atresia – is to blame, and if so, he will never be able to potty train. If he misses his daily dose of omeprazole for severe gastroesophageal reflux disease (GERD), reflux is inevitable. He has cyclic vomiting syndrome, which means that every 3 months he vomits for about 4 days straight, undoing all the improvement made with his much-needed weight-gain.

Do you see what happened? “This too shall pass” came true for my biological son. The puke, poop, and pee cleanups ended! He began sleeping through the night! The things I’d been so frustrated over, and exhausted by, finally came to an end.

But now I have a son who, by all appearances, will always: Pee his pants. Poop his pants, and do so upwards of half a dozen times every day (that’s 1,460 bowel movements a year…and if you don’t offer up sympathy for me for that, we can’t be friends). Vomit about 48 full days a year, producing endless mountain ranges of putrid laundry. Sleep very poorly. And live with us. He will always live with us. Other couples get to say, “when the kids move out of the house, we plan to _.” Sean and I will never say that.

All the things that frustrated and exhausted me with Findlay will be everlasting with Coen. When I’m 75 years old and he’s 42, I’ll be changing his diapers, making his meals, wiping his face, cleaning his spills.

I was bitter about those facts for a long time. I was bitter toward God. I was bitter toward Coen. I had zero desire to bond with my adopted son, which was fine because he did not seek any affection from me, either. (That’s typical of people with autism.)

I prayed constantly for God to change my circumstances so I would cease being so angry and unhappy. “God, make Coen chew, make him potty train, make him talk, make him understand more than basic directions, make him sleep better so I can sleep better.” God answered none of those prayers.

One day, after I finished praying, I took the time – for once – to wait and listen for God’s reply. What he said was not what I wanted to hear: “I may never change your circumstances. I may never improve Coen’s abilities.”

My heart sank.

“What I can change is your heart, your attitude. If you’ll let me.”

What a terrible offer! Why not just make Coen MORE ABLE than DISABLED? That seemed far easier than turning around my deplorable attitude. But if there’s one thing I’ve learned in my 25-year relationship with God, it’s that he doesn’t bargain. He makes the best offers you’ll find anywhere, and lets you accept them if you’re wise enough.

“Fine. Change me if you won’t change Coen,” I said reluctantly.

“And praise me through it all,” he commanded.

What? “It won’t be sincere praise,” I promised.

But I praised him anyway. Because if there’s a second thing I’ve learned in my longstanding relationship with God, it’s that if I step out in obedience – even if I’m doing so unwillingly – my attitude often follows.

So I began playing more praise music at home and in the car, replacing the classical music that perpetually played in both places. Sometimes I even sang and danced. This delighted the kids, who followed suit, their smiles relaxing my clenched jaw, fists, heart.

But then Findlay would spill another full cup of milk on the floor, or Coen would bathe himself in his pumpkin and peanut butter lunch. I’d have to change Coen’s overfull diaper and his poop-covered outfit in the middle of grocery shopping. Coen would wake me up at 3AM…for the third morning in a row. And then we’d be on a family hike at the foot of the beautiful White Tank Mountain range, and Coen would begin screaming at the tippy top of his little but powerful lungs, putting an end to the serenity not just for our family but for all the hikers within earshot, because he had no other way of letting you know he’s tired. What to do in these circumstances? Sing praise songs? Worship God through prayer in the middle of all that noise and mess? Yup.

What’s the alternative? There are none worth entertaining.

These days my kids are both nearly 6 years old, and you’ll still find me on my hands and knees cleaning up food or poop smears (sometimes it’s hard to tell the difference), singing songs of praise to the God who has not (so far) significantly changed my circumstances, but who has begun to change my attitude. Because while I’m on the floor I often feel frustration welling, but God speaks to my heart amidst the slop and noise, reminding me that whatever it is I think I’m missing – watching TV, relaxing with a Dickens novel, pursuing a career – in order to do this thing for my kid, it isn’t worth a second thought. It’s for THIS very thing he created me. He created me to be a Mama to two boys, one of whom will likely grow up and move out, the other, always need me. He created me not to leave my boys with someone else to raise for hundreds of hours during their most impressionable years; rather, he created me to do all the things necessary to raise two boys who know that they are loved with a love that exceeds our human understanding – loved by me and their dad, and, most importantly, loved by God. So when I am finished cleaning up one kid’s poop only to find that the other kid puked (that actually happened), God gently reminds me that it is at this very moment that I am fulfilling the very purpose for which he created me. And in realizing this truth I have found the sincerest joy I have ever known.

It doesn’t make sense, but the less I live for ME, and the more I live for my kids (and my husband and those whom God has put in my life to help), the more peace I find. Who doesn’t want more peace?

My dear, beautiful, sweet-spirited friend, Laura, was hit by a commuter train 10 years ago. She was in a coma for 13 days, had a stroke, and developed debilitating seizures. She does not walk normally and cannot drive which makes it hard for her to hold a job. I find her absolutely amazing because although she did not choose to endure the terrible things that happened to her, she praises God continually anyway.

The lesson Laura and I have each learned is that “this too shall pass” is not a truism for everyone. But whether God chooses to change our circumstances or not, we can absolutely find joy in the midst of it all by allowing him to change us.