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How we remember our baby boy, one balloon at a time

A single raindrop hit my forehead and traced a line down the left side of my nose. It mixed with the tears that were blurring my vision as I strained to see the bright blue balloon drifting skyward.

It was a brisk fall day in Edmonton, and we were gathered with hundreds of other families, to mourn the loss of our little ones. We are a group united in grief – by the emotional scars of losing babies due to miscarriage, stillbirth, early infant death and SIDS. Each year we see the number of families grow as word of this event spreads. Each year, as we hear their names read aloud, we release our balloons.

It was four years ago today that our son Jonas was born.

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He was with us for just 27 short days. It's not supposed to happen like this.

Denise and I were married in early 2007 and were thrilled later that year to be expecting a baby boy. Denise had a model pregnancy; we had painted the baby's room a brilliant shade of yellow aptly named "Joyous," had lined his bookshelf with toys and books – some of which I had been saving from my own childhood.

It was early April, 2008, when we went for what we thought was a routine ultrasound. Routine until the doctor expressed concern over what appeared to be an excess accumulation of fluid around our baby's lungs. We were shocked when the doctor decided to admit Denise for further tests. Two days later, on April 6, we were in an operating room as our baby arrived early by cesarean section.

We knew he was born two months premature, but at nearly four pounds he was at the upper end of the preemies. We were told he could be in NICU for months, but we took solace from a kind nurse who assured us it would all turn out fine.

As Denise recovered, we went back and forth from her room to the NICU, and we came up with a name for our little survivor: Jonas.

Over the next few weeks, we spent every possible moment at the hospital. Jonas's health would seem to improve, his medications would be reduced, then his health would decline and we would start all over. Specialists came and went, tests were performed, new medications were introduced and we struggled to make sense of everything. We often stayed overnight in the ward to be near Jonas, making the most of every moment, reading him stories, talking to him, reaching through the incubator wall to caress his head and feet, to hold his little fingers and feel his reassuring grip.

One evening, a cleaning lady who noticed that we had placed a cross in Jonas's incubator told us she was praying for us, and the next day her son, a young minister, joined us for prayers. Soon after, we had Jonas baptized in his incubator by the hospital's pastoral care staff.

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Then the turnaround happened. It was now nearly three weeks since Jonas's birth. The fluid in his chest appeared to have abated and the tubes started to come out. His colour changed and his puffiness decreased. Overnight, Jonas began to look like a normal little baby boy. On our first wedding anniversary, April 28, we received the best gift imaginable when the nurses brought him out of the incubator and Denise and I were able to hold him for the first time.

But after 26 days of highs and lows, the 27th day brought the conversation no parent should ever have to endure. "Your child is dying," the doctor on call told us, trying to explain in simple terms that Jonas's little heart was no longer able to keep up with the demands of his body. As each of us held one of his tiny hands, Jonas continued to squeeze our fingers. Was he trying to tell us not to give up on him, or trying to let us know it was all right for us to let go?

We were ushered to a room at the back of the ward. Past the other parents with their little babies who would live, while Jonas would not. It seemed like forever as we waited for him to be disconnected from all the lines and hoses and wires. Then there we were – alone with our dying baby, holding him as close as we could as he drew his final breaths and his little heart stopped beating.

In the four years since we lost Jonas, we have moved from devastating grief and anger to eventual acceptance. We have become more compassionate in our lives, have learned to be grateful for the brief time we had with our son and have found ways to bring meaning and permanence to Jonas's short life.

Those who did not acknowledge our loss were replaced by those who became our support network – a discussion group for parents who had lost babies, a nurse who had lost babies of her own, a counsellor who had supported other parents through their losses, a grief course with other parents, annual services and the walk to remember in October. We accept that our lives will never be the same, that we will have good days and bad, and that this is the new normal. And through it all, we know our love for Jonas transcends this time and space.

And so every October we stand among other parents – of the 15,000 babies that die each year in Alberta alone, of the tens of thousands across Canada – who lose babies each year. And we watch as Jonas's blue balloon playfully bounces among pink, yellow and white balloons that are joining it on its journey up, up and away.

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Brian Geislinger lives in Edmonton.

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