A personal story of loss, grief and the positive things they can engender
“Hey you, you mongo!” I heard comments like this from students many times when I worked as a careers adviser with teenagers a few years ago. They were not addressed to me but to each other. They seemed to use this word “mongo” when they meant someone was being silly or stupid. I had no idea why and I asked one of my colleagues what they meant. He clearly didn’t want to talk about it and changed the subject. I was left wondering why he felt uncomfortable, and why this word sounded like “Mongolia”, which is where I was born and grew up.
In November 2009, my third child, Billy, was born. It was an emergency section as he turned breech at 38 weeks. As soon as he was born, he was taken away to the neonatal unit in the hospital and my husband and I were left hanging for a few hours without knowing what was going on. Finally, a doctor and a nurse came to speak to us. “There are some symptoms of Down syndrome in your baby”, one of them said. That sentence changed our lives forever. I remember being annoyed and angry with these medical people for brining such news to us. It was a shock; surely our baby was perfect.
This was on a Saturday morning and we had to wait until the Monday to receive confirmation of whether Billy had Down syndrome or not. We were alarmed and confused. I cried a lot and read about Down syndrome on the internet. I had seen some students with the condition in the colleges I had worked in, but I realised that I knew very little about it.
On the Sunday, my husband and I spoke to the consultant in charge that day. She apologised to us saying: “We are very sorry to cause so much stress and anxiety. I think that your baby does not have Down syndrome. I think we might have been confused because of your background”, and she looked at me.
It was such a relief and we felt so much better. Maybe, we thought, they had never come across a Mongolian/mixed race baby. However, when Monday came, the blood test result confirmed that Billy did, indeed, have Down syndrome. I felt as if someone had bashed my face with a big stone, and our lives seemed to be put on hold at that moment. There was nothing in this world that could fix this.
A doctor tried to make me feel better and said that “Perhaps people might not notice Billy has Down’s syndrome because of your background.” I appreciated her effort but couldn’t help being annoyed by her comment. I was offended, so I brought a photo of my two older children in to hospital and put it beside Billy. I wanted to show people that not all my children look as if they have Down syndrome just because their mother is Mongolian.
Billy lived for three months. He had a heart gap and we later found out that he also had cerebral palsy. He spent his first and last month in hospital, and was at home for Christmas and New Year. It seems like such a short space time and it was very difficult for all of us.
On February 24, 2009 Billy died in our arms. Our baby boy had spent a month in intensive care and we had to let him go. Seeing Billy on a ventilator for a month, and not being able to hold him because of all the feeding tubes, IV lines, draining tubes and catheters, was the most upsetting time. When he cried there was no sound, but his little face showed that he was upset and I begged the nurses to keep him pain free.
We are grateful for the spiritual support offered by the hospital. Billy was baptised by the hospital chaplain and a local Buddhist nun recited her prayer mantra before we said our final goodbyes. It made a difference for us. We did everything we could while he was with us. We cuddled Billy in turns and when we felt ready, the consultant took out Billy’s ventilator. He lasted about thirty seconds before our red haired little angel left us forever.
Since Billy died, we have been managing our grief in different ways. Losing a child is the most unnatural thing, and just because he was ill and had a disability does not make it any easier. It is hurtful that some people seemed to think that we would grieve less because Billy had special needs, but we know that we would have found our own ways to cope with Billy’s different demands and needs. Every child has different and “special” needs, and what I learnt with Billy is that we all have strengths which we don’t know about. Feeding Billy through a tube, giving him the correct amount of diuretics and keeping up to date with his medical appointments all became our normality.
After Billy passed away, we started lighting a candle for him every day, mostly at his grave or at home. Once everyone else was in bed, I would call helplines into the night, and I started writing a blog, pouring out my heart online. This helped me, as I didn’t have to make my family and friends feel my pain; I simply wrote about how I felt at the time.
After I had started writing the blog, I found out that the British Library has to have a copy of every book published in Britain, and this convinced me to start writing a memoir of our time with Billy. Through writing, I discovered many interesting opportunities. I worked in an Oxfam book shop, with a view to researching publishers and agents. I became a Community Ambassador for the Scottish Book Trust and BBC Radio Scotland, working on the Family Legends project which encourages people to write personal stories about their families. When the project published some of these stories, my own story for Billy was published too. I have also been involved in fundraising for Troon nursery and Yorkhill Children’s Foundation, and have trained to be a public speaker for the Foundation.
Recently, I have been trying to raise awareness of the negative use of the term “Mongol”, using the radio, my blogs and social media to highlight the derogatory connotations of the term.
It is likely that I would never have become involved in any of these activities had it not been for the reality of Billy’s tragically short life, so I hope that at least some good has come out of the intense feelings of pain and loss my husband and I continue to feel.
Uuganbayar Ramsay publishes a blog at: