It may make you uncomfortable, but I want you to know about the son we lost

"There are some problems with your baby."

I was living 2,000 kilometres from Newfoundland, and I had a toddler playing on the floor beside me when the room filled up with specialists telling me the baby with the beating heart on the monitor probably wouldn't make it.

They couldn't tell me if it was a boy or girl and explained that was common for babies with Trisomy 13.

At the end of each class I waited around. Nobody spoke to me, as if I was contagious.

There was a small chance the baby would survive to term, but the life expectancy was 12 months at best.

Since I was still pregnant, I continued doing the standard things expectant mothers do. I went to prenatal yoga the next day.

When we went around the room introducing ourselves, I heard how stressful it was to pick a colour for the nursery and how expensive strollers are.

I shared that I didn't know how to clean a feeding tube and that I was having nightmares about the baby dying at home in front of my older son.

I remember all the swollen bellies and the looks of horror on their faces. They all pretended to rub wrinkles out of their maternity shirts, to avoid making eye contact.

At the end of each class I waited around. Nobody spoke to me, as if I was contagious.

Six and a half weeks later, we lost the heartbeat. My ob-gyn told me how sorry he was, and then hugged me and sent me straight to labour and delivery. He promised he'd be at the hospital when I got there.

Our private room had a picture of fall leaves taped to the door. A medical student insisted he was qualified to insert the misoprostol to induce labour. Another student tried to run an IV seven times before they got an ER nurse to come do it.

The sound of new babies down the hall

I insisted I didn't need an IV but they said it was standard procedure for birthing mothers.

It took another four hours for my doctor to arrive.

I could hear new babies coming into the world down the hall. There was a happy family checking in at the security desk with a balloon bouquet.

Across the room there was a poster on the wall of a healthy newborn snuggled into a good mother.

I had a great attending nurse. She got called in for these sorts of deliveries. She said I could ask her anything. I asked her to take the poster down.

About 12 hours after I left my doctor's office, Joe Grayson Morgan arrived at 12:50 am on Feb. 15, 2013, weighing 1 lb 11 oz.

He was born in the caul, which is supposed to be a sign of good luck.

Every year I relive those details the appointments, the smell of the soap in the hospital bathroom, the ultrasound images they had to take of his heart before the induction, Joe lying lifeless on the monitor.

I know it isn't socially acceptable to talk about grief after a year or two or five but I couldn't participate in my life with my two healthy boys because I just couldn't move forward. Sharing helped.

For the grace of Joe

Last year, on the anniversary of the day we were told our baby probably wouldn't make it, I started writing about Joe. Six and a half weeks later, almost to the minute we lost him, I finished For the Grace of Joe.

It was self-published the same week we should have been planning his fifth birthday party.

I had a friend at the time who said she would read it if it was funny but not if the whole thing was about a dead baby.

After it was published, I had another friend ask if I continued the pregnancy to get more attention for myself.

There was another day, however, that I was contacted by a father in the midwestern U.S. who had just received a Trisomy 13 diagnosis. He said his wife was five months pregnant. He wanted a copy of the book to help her in the highly likely event that they lost their baby.

The stories I found online at four in the morning when I was pregnant with Joe kept me going.

Some were hopeful and others offered advice on how to get through an imminent stillbirth.

They were even more helpful when I was expecting our rainbow baby. That experience was almost as hard as the loss for very different reasons.

What I look like when my heart breaks open

A couple of weeks ago I was interviewed by CBC to share a part of Joe's story the particulars of going to the hospital and being around healthy babies. I cried a lot more than I expected.

The picture they used with the story shocked me, though for the first time in my life I looked at myself with some compassion.

That's just what I look like when my heart breaks open. It felt good to have anyone asking about Joe.

After CBC's Ariana Kelland left my house, I couldn't think straight for days. I worried about which parts she'd use and if it would even matter to anyone.

About 10days before I lost Joe, I asked for a full prenatal ultrasound. At the request of my doctor, the folks at the clinic agreed to avoid any talk of death, no mention of abnormalities or quality of life nor any questions about why we weren't terminating the pregnancy. He asked them to give me a DVDcopy, which was standard procedure for pregnant women.

That DVDhas been missing for the last five and a half years. I've searched every corner of our house over and over.

We've moved four times since we lost Joe. I kept a blanket he was wrapped in and all of his paperwork and a packet of pictures from the hospital, but I've never been able to find the DVD.

After our story aired on CBC, I felt lost and vulnerable all over again. I wanted to be near Joe's things and there sitting on top of the blanket was the DVD.

I called my husband and two boys into the room and we all sat around the computer watching the last ultrasound we ever had of Joe. He's rolling around, kicking, waving and most importantyou can see his little heart beating away.

Some loss moms say they get signs from time to time.

Dealing with the grief

My therapist diagnosed me with post-traumatic stress disorder because it kept the funding going for the sessions. Grief isn't technically a mental illness.

When I moved home to Newfoundland this summer, someone in the field of loss and counselling told me grief is often misdiagnosed as PTSDit presents with a lot of the same symptoms.

A woman who carries on about her loss all these years later though, I mean, that's just not right. Surely she must be over that unfortunate experience by now. Tsk tsk.

When people ask me how many kids I have, I've tried saying two. And then I go home and get sick to my stomach.

Now,I take a deep breath and say two with me and we lost our middle son. It makes some people uncomfortable but sometimes a person will tell me a similar story.

Sharing helps.

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