“The beautiful death of my son.
Time stood still after we walked through those doors. I knew the news we were about to hear couldn’t be good, there were several doctors in the room I knew were specialists, our team lead doctor and of course Tara, our constant support and Lochlan’s lead nurse.
I knew the news couldn’t be good. But I didn’t expect it to be this. ‘We got the final results of the test. It isn’t good. There are things we can do…to, prolong things. But we think…I think… you need to know, Lochlan is not going to survive.’
Those final words hung in the air like a feather, delivered so quickly we couldn’t quite understand the weight. I looked at everyone in the room, I was so confused, when were they going to tell us what the next step was? There was always another step, another thing to do, a course of action to take. They were doctors, their job was literally to fix my baby.
So why was no one talking?
My husband squeezed my hand very, very tight. I think (but can’t be sure) he choked on his own moan, stifled it back down his throat so I wouldn’t hear it.
‘But…what will you do next?’ I asked.
‘Do we just wait now, until you figure out how to fix him?’
It was a genuine question, truly. I had no concept of my son dying – it seemed absurd. We were surrounded by million dollar machines and people who dedicated their lives to medicine. Surely one of them just had to go into a lab and think hard enough on what the miracle cure was.
For the next 20 minutes we were given test results and statistics and options, all of which made no sense to me. I sat on the tiny love seat my husband and I shared in that yellow hued room and let tears fall down my face. Slowly, my heart crumbled.
A child dying is unspeakable. An unspeakable event so crushing, people can’t even say it. Our doctor chose to say ‘he wouldn’t survive’. For years after I always referred to ‘losing Lochlan’, like he was still lost in a department store and I just needed to go pick him up.
No, the death of a child is not something we can comprehend because dying before you even have a chance to live is so unfair.
My son was cheated. Our family was cheated…out of time, out of memories, out of experiences, out of life.
The 21 days leading up to that moment were pure chaos. Everything was wrong with Lochlan, and after an emergency C section that felt like a dump truck was rolling over my abdomen, he was rushed away to the NICU and I was sent to another wing for recovery. I didn’t see my son for 8 hours after birth. I didn’t hold him for 5 days.
By the time we received his terminal diagnosis, I had held him twice.
I really don’t have the appropriate vocabulary to describe the hours between receiving the news in that yellow room and when I held Lochlan while life support was ended. Those are moments etched in my memory forever and it feels too raw to share them yet. So, for my own well-being, I’ll skip to a part of his life that was truly and utterly bliss.
Seventeen hours after we ended life support he was still breathing. He had survived the night and my husband and I were in a strange state of ecstasy after being able to hold and even sleep with Lochlan on our chests for the very first time. We were transferred to a place we now refer to as our saving grace; Canuck Place Children’s Hospice. A beautiful heritage home that assists parents in the final stages of their child’s death.
What a truly terrible place to need, but what an absolute gift it was to go there.
For the next 7 hours, we lay in bed with our son. The room we were given was full of light and fresh air – huge bay windows lined the wall to my left, a spring breeze coming through the curtains. The room was large and our entire family joined us in chairs around the massive king bed, some of them sitting at the foot trying to be as close to their nephew as possible. Lochlan lay on my chest, and then my husband’s. He was awake and then asleep and then awake again. My sister-in-law snapped photos, my dad told jokes, the nurses brought us all coffee and cookies, the mood was light, and honestly…it was some of the best moments we’ve had since Lochlan was born. It’s so very confusing to feel joy at the brink of total heartbreak, but I did. I was crying, but I was so incredibly grateful for these moments of happiness, grateful Lochlan heard his family laugh only hours before he died.
We asked everyone to leave and we soaked in the final hours with our son. Somehow this time we had with Lochlan was full of sunshine, and we were able to see it. In the NICU there were no windows, no way to tell the time of day. But here in the hospice, the sun dropped low enough and a ray of sunshine fell across Lochlan’s face minutes before he died. I sobbed and felt a swirl of guilt rise up; I had never expected to see my son in the sunshine. I never even imagined what his hair would look like in the glow of the afternoon. I never expected to take him outside, to take him home.
The courage my husband and I mustered to peacefully let our son go was other worldly. Because of the dramatic way Lochlan came into the world, I will never know what laboring feels like (I have had three C-sections), but if I had to imagine the strength and bravery needed to push a child into the world I think it would be something like what I did to let mine go.
My son was 22 days old when he died.
I lived a lifetime in those 22 days, I became someone new and I lost an innocence I wish I still had. My heart will never repair. It will, of course keep beating and will soften over time, but there is a tear in my flesh that cannot be stitched back together. That space, the gap between the two beating walls, is where my son lives.
The death of a child is unspeakable, until it’s not. Please don’t shy away from this story, or from that of a friend who needs to say things out loud. The grief that follows the death of a child is unbearable, and isolating, and suffocating. If you read this entire story…thank you. Thank you for allowing my voice all the way in and for making some uncomfortable space in your day for my beautiful, brave son.”
This story was written by Katie Jameson of Vancouver, B.C. You can follow her on Instagram and her website. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
Provide hope for someone struggling. SHARE this story on Facebook and Instagram to let them know a community of support is available.
Read more beautiful stories about children that were lost too soon here:
‘Our son’s entire 18 hours and 16 minutes of life, he was never alone. He was fiercely loved, deeply cherished, and widely celebrated.’: Mom turns loss of son’s ‘fleeting life’ to Trisomy 18 into ‘something of value’