By Heidi Jost
It is said that life is full of storms: If you aren’t in the midst of one, you have either just come through one or are headed into one. Mercifully – and frighteningly – we don’t know what clouds lie on our horizons. There are sea charts noting shorelines, shoals, ocean currents, and doldrums. But God offers us something infinitely better than a comprehensive print-out of our life’s hardships. He gives us Himself.
This angers some people, who would rather have explanations for their suffering or a tangible hand of God than be offered the invisible presence of Jesus to accompany them. The thing is: What do we really need more when breakers of pain and fear are washing over us? Clinical answers? Or Someone who has been to the depths of human suffering and promises to deliver better comfort than anyone else can give us?
The reality of our past year held the most terrifying storm we have ever been through, and our five year old Elijah’s life was at the centre of it.
Through the month of July, our middle child – big-eyed, slender Elijah – was increasingly whiny, thirsty, hungry, and unable to keep from wetting his bed at night. Something was off, but we couldn’t put our finger on what. He seemed to be thinner than ever – was he going through a growth spurt? Then after a full week of vacation Bible school at church, Elijah puked and showed flu-like symptoms. We were so frightened by how he had become skin and bones so rapidly, and on August 15, he woke listless, mumbling, and complaining of chest pain. Jesse hurried him to local ER. After multiple tests, consultation with Lethbridge doctors, and being intubated to pump excruciatingly painful built-up air from his stomach, Elijah was rushed by ambulance to Lethbridge. He was severely dehydrated; very constipated; blood sugar, ketones, and heart rate very high; liver stressed: the signs of diabetic ketoacidosis (DKA). His tiny body was fighting to survive the shutting down of insulin-producing cells in his pancreas, cells we’d never heard of before, but were suddenly the reason our son was teetering between life and death. Elijah was now a Type 1 diabetic, the doctor told us. Unless a cure was found, he would have this autoimmune disease for the rest of his life. A nurse from the Lethbridge diabetic team came the next day to explain insulin injections, glucose readings, etc., and I couldn’t stop crying the whole time. It was so much to process.
I probably sound dramatic here. I tend to use understatement when explaining the hard stuff in our lives to others; I’m fully aware others go through massively difficult things, and I never want to claim that our hard stuff is just like those experiences. But man, this was more than I could generate strength and understatement for.
The other day I was gathering together everything we had written during the time of Elijah’s DKA. I sobbed like somebody had died, rereading and reliving those days. The thing I cry over most is how close we came to losing him, and we didn’t see it. If you boil down a parent’s job to its most basic qualification, it’s this: to keep your kids alive. We almost failed our job.
But you know what? After the tears stop, I have to look at the other side of this storm: Thank God for medical people who knew what to look for and what protocols to follow to bring him back to health! There IS a way to keep Elijah alive! While no permanent cure has been found yet, he can take four shots of insulin every day that cause his cells to receive energy from the food he eats. It’s a daily, absolutely astounding miracle. There’s healthy weight back on his little bones and a glow in his face that was once sunken and gray. Just last night, he was bustin’ out dance moves and talking in a silly accent that made us howl. He’s back, and he’s better than ever!
And the hardest part of diabetes care – tracking blood sugar levels – has become easy, thanks to recently developed Libre sensors that were approved for use in Canada just before Elijah’s diagnosis. We are unbelievably grateful for this technological game-changer!
A song heard just when its message is needed most can be a lifeline. In those first raw, shaky days after coming home from the hospital and doing diabetes care on our own, we came across “Even If” (MercyMe), and have been strengthened by its lyrics so many times. (link to listen here) Bart Millard, who wrote it, has a teen son with Type 1 diabetes. He gets it. He knows what we go through every day.
Even more, God knows what we go through. God saw Elijah’s body start to struggle in July. Why didn’t He heal him? I will never know. Why didn’t He prompt us earlier to take Elijah in to the hospital? I don’t know. Like I said, we don’t get all the answers – sometimes none. This has been a storm testing our trust in the Unseen One who claims to be good, even when life appears straight up not-good at times.
Every night now, we do our parent job of keeping Elijah alive: we set alarms once or more to check his blood sugar. If it drops too low, he can go into a coma or die. I’m no superhero, and the fear that comes with this responsibility has been crippling. I ask Jesse: What if we miss an alarm? What if he dies? We’re only four months into this life-long journey. We have to just go on doing our best, and remember that God ultimately keeps Elijah’s little heart beating. (Picture below is the day of Elijah’s DX on the left, and after three months of insulin on the right)
The things we feared most never came to pass this year, and the thing we never imagined – never clocked on our radar of things-to-freak-out-about – came knocking at our door. We were afraid I would miscarry our new baby, conceived after a painful miscarriage in summer 2016. But wee Eric Spurgeon was born hale and hearty July 11, and today marks five months of solid delight that his dimpled self has brought us.
Sophia started having almost daily stomach, head, and leg aches in the spring. We feared some sort of disease…maybe a tumor? Turns out her lower digestive system wasn’t being efficient, if you know what I mean. She’s all good now. We feared that my thyroid biopsy would show cancer. Good news: my thyroid nodules, while still making my throat look lumpy, are benign. On the other hand, we never imagined Type 1 diabetes as the cause of Elijah’s thirst, hunger and bedwetting
So of what use was all the fearful imagining and worrying? None. A Holocaust concentration camp survivor, Corrie ten Boom, observed that “Worry does not empty tomorrow of its sorrow. It empties today of its strength.”
As for the rest of our family:
Jesse is an incredible rock for all of us. He is grounded in Christ, clinging to Him, and from this place of strength, he servant-leads our growing tribe. He loves us fiercely, and listens to our needs, doing his best to meet them. I couldn’t ask for a better friend and lover on this journey around the sun.
A neighbour who drives school bus on a local route offered Jesse the job for a few months. This was a generous God-send, because Jesse was able to be home for a few hours between dropping off and picking up kids from school, and help with Elijah’s diabetes care (so many decisions to be made for that every day) and caring for our other kids.
Chronic disease can be a huge strain on marriage relationships. We have seen this in ours, and are finding ways to fight for us, to carve out time to reconnect when kids and diabetes can easily take up our whole daily focus. Jesse built a beautiful guestroom in our basement this summer, so we retreat to the quiet there for in-house dates while J-M and Sophia handle the mayhem upstairs. We also have absolutely amazing friends and family who have stepped in at times and babysat, cleaned house, sent meals, and prayed like crazy for us. I am humbled to tears by their acts of love. Yep, a lotta tears these days from this chick….
John-Michael (10) reminds me of Jesse in many ways. He is tender-hearted and willing to serve, adores our babies, devours books, and has many creative pursuits: This year’s trail of inventiveness included crochet projects, whittling, scrollsaw work, making pie, bike repair and building a bike, and obsessive Lego building. Maybe someday that fire of self-motivation will prompt him to learn how to sing on pitch. We will all rejoice at that.
Sophia (8) is a spunky force to be reckoned with. She’s loyal and a quick wit, and can make her brothers laugh or cry by turn. She’s a baby-whisperer, soothing and entertaining Eric like nobody’s business. Behind those gorgeous brown eyes is a loving soul that we have seen God shaping more than ever this year. In the past couple of weeks, Sophia has had a deepened sensitivity to God showing her things in her life that He wants to set her free from. One of the best things about being a parent is experiencing these unexpected, uncontrived moments where God is clearly the mover and shaker in our kids’ souls, drawing them to Him.
Elijah (5) has shown such maturity with his new life change. He is involved in most steps of his daily care. He knows the carbs in a lot of foods, knows what foods to eat when his blood sugar is high or low, how we can lower high blood sugar, why he has to check ketones and drink extra when he’s sick, and always asks before he eats anything. I am blown away by his understanding of the need to take care of himself.
Justin (3) must give me an average of five hugs and “I love you’s” or “I’m glad you’re my mom” a day. He is such a precious kid and extra needy in the face of all this year’s changes. He also looks up to his big brothers and mimics them, so what they get, he wants to have. The goofing off they do, he wants to do. We have rules about not horsing around in the house, but Justin has a built-in spring that projects him off couches, stairs, and over the edges of things. Despite consequences, he is a Tigger at heart and can’t stop jumping. His expressive, funny little face make us smile, while his antics keep us gasping.
And Eric (5 months) is so much FUN! This is Baby Experience #5, but realizing more than ever now how fleeting these baby stages are, I feel like I relish it more this fifth time around. Eric has chalked up the charming, dream-baby factors: he has TWO dimples, massive thighs, poops like a champ, drools like a dog, chews on everything within his spastic reach (which now includes his toes, making us wonder how he can even bend those fat legs that far), and loves to “rough-house,” screeching and laughing when we play with him.
Even on permanent sleep-deprivation, struggling through a season of depression, sometimes wanting to run away from it all for a bit, I see that our life is full of tangible, good things: proof that God is with us, the God who got us through the biggest storm we never imagined. We’ll make it through all the other ones ahead, too. I don’t know how. But He does.