I feel as though I have lived the last four years on autopilot.

Ever since September 18, 2015, I think my mind and body has been in a kind of crisis state. To give you a better understanding of what I mean by “crisis state,” consider your last visit to the ER. I haven’t seen the inside of an emergency room for over half a year. This is a big deal because visits to the emergency room were the norm in my family for a very long time.

Stephen used to say that we were emergency room professionals. You see, for most people, their visit to the ER would usually be an abrupt and necessary visit. Stephen’s leukemia meant his body was always neutropenic – that meant that he had no “good guys” to fight every day germs. That was why he always wore a mask – his body couldn’t protect him from the air we breathe. When he had a fever and was neutropenic, he was supposed to go to the hospital right away. I say “supposed to” because we learnt over the years that with leukemia, there were “good” fevers which you could try to sleep off, and then the “bad” fevers which was most of the ones Stephen had.

As peculiar as it seems, we managed to find a certain routine around emergency situations. The moment Stephen clocked a fever, I would check to see if someone was at my mom’s house to watch the kids or if someone could come over to put them to bed. We knew which times were the best times to go (between 6pm-8pm), which hospital to avoid (only the University of Alberta had the specialists to handle his case) and which days we were most likely to see a doctor (don’t go on a Saturday – no one is there).

Once the day home closed and most of the conditions for a good ER visit were met, we began our preparations. He had a blue bag that he got for Christmas that was his “hospital bag.” In it I would put his pre-admittance papers, his favourite sandals from Rome (story about that in another blog), his trusty rosary and prayer books, a change of clothes for a few days (because nine times out of ten, he was going to be admitted for at least three days), and our laptops (because throughout all of this we both ran our own businesses and unfortunately, time stops for no one).

We would pack up the kids – literally with a bag of toys, change of clothes, and extras that come with four kids – and pile in the car. Sometimes one of our siblings would often come over and watch the kids or we would drop them off at my mom’s; we are lucky enough to have my parents live five minutes away. I am quite surprised at how resilient my children were throughout all of this; the fact that they knew what to do when I said, “We need to bring daddy to the hospital, get your things ready,” is a tell-tale sign that hospital trips were a regular occurrence.

On a good day, we would stop to pick up some dinner before heading to the hospital; those were our only “date nights” over the last few years. On a day when he would be so pale because he needed a transfusion and just needed to get to the hospital, it would be silent trip just holding his hand. When he would finally be admitted (usually after only a half-hour or at most two-hour wait; my apologies to all the people we had cut in front of to get the vacant bed), I would wait until they took his blood cultures, took a routine x-ray and administered the first round of antibiotics (usually vancomycin or pip-tazo). Once he was settled in, I would set his slippers out and set up his work table with his laptop and his ice water. After a pep talk, I would give him his rosary and phone (which had to be plugged in) and tuck him in the hospital bed. Most couples may hug or kiss to show support or solidarity, we had a fist bump and a very intricate handshake that simply meant, “We’ve got this.” I would usually be half way out of the door when he would say, “Kiss my kids for me.”

There were constant text messages and phone calls through the night to see how he was doing; I would often check to see if he got a room or if he told his parents or siblings where he was, or if a doctor cam to see him yet (the answers to all would always be “no.”) If it was a weekend, I would usually leave the kids with my mom (or one of my brothers) and return in the morning with breakfast. If it was a weekday, I would return in the evening after the day home closed or visit in between the events I managed at our event space.

This was our normal.

As I write this, I realize how flippantly I just described a subject as morose as an emergency room visit. Looking back, I know that our life was a far cry from that of normal family life. But for us in the midst of it all, an emergency room visit, a four hour blood transfusion, or a week-long hospitalization was as necessary as making a meal or folding laundry.

It has taken several months (and I am sure it will take several more years – or even the rest of my life) to begin to make sense of what happened and how we managed to stay afloat during Stephen’s final years. The only answer I can think of comes from a modern parable called, “Footprints in the sand,”

“…my precious child,
I love you and I would never leave you.
During your times of trial and suffering,
when you see only one set of footprints,
it was then that I carried you.”

We were carried. It’s as simple as that.

We are still being carried.