"When Emilio was born we had no idea he would have Down Syndrome. I chose to forgo any prenatal screening or tests with both my pregnancies as I did not trust myself, and today I’m eternally grateful that I ignored my fears and listened to my inner instinct. I’m now the mother of two beautiful and wonderfully perfect human beings.
“However when we were first told of his condition, we felt devastated. I felt as if I’d been robbed of the son I had dreamed of, and that my infant would have a life I had no idea about. I was besotted with my tiny bundle, but terrified that I didn’t know what his condition meant for him, for his sister, for me as his mother or for us as a family unit. I had virtually no exposure in my 40 years of life to people with Down Syndrome and I felt as if I had been plunged into a world of darkness – at least in those first few days of receiving the news...
“Emilio was taken into NICU straight after birth and spent his first week in an incubator. Those seven days are a blur of love, tears, joy, confusion, wonder and fear. I met a wonderful mother during that time who had an 18-month-old baby boy with Down Syndrome and I found enormous comfort in her understanding and insights about what comes after that initial shock. After the initial shock you feel the same intense adoration for your perfect little baby, even if it is tinged with an added layer of panic, as there STILL is a huge element of the unknown that stays with you.
“It can feel very lonely raising a different child among mamas with typical children who are hitting milestones more or less on schedule. I realised early on that there was a need for a support group based in the UAE for mums with young babies with Trisomy 21, which is where the idea to start my own Whatsapp support group was born from.
“Initially I gained a lot of insights from Facebook groups of parents of children with Down Syndrome, but as they were mainly based in the US the content was only partially helpful. However, they did help dispel a lot of the incorrect stereotypes I harboured and lifted much of the mystery around how a person with an extra chromosome 21 functions. I discovered that there was absolutely nothing to fear. Our children are capable of functioning like any typical child and that, in fact, there is no ‘us’ and ‘them’; it’s truly just about children with different abilities. But the key word is: Ability.
Babies and children with Down Syndrome hit milestones in their own time, but it’s important to remember that they do hit those milestones.
Our journey so far
“In terms of my experience of motherhood with my daughter, who is neurologically typical, compared to my son, perhaps the only major difference has been in the changes to our routine. So, instead of attending all kinds of baby classes as I did with my daughter, our time with Emilio has been spent sourcing the right kind of therapists (physio, speech, occupational) and attending sessions with them regularly. And our time at home has been spent applying what we learn from these professionals so we can increase his maximum potential. It’s a steep learning curve, but the rewards when you see your child’s hard work pay off are impossible to describe.
What motherhood means to me
“Children have the ability to ruffle up your whole outlook on life and force you to become deeply mindful of yourself and how your actions might impact them. You quickly realise that to become an effective parent, you have to allow for a large amount of self-care, as it’s very easy to get swept up in the new role of motherhood and forget about where you stand in the whole story. Personally, my children have given me an opportunity and reason to delve deeply into how I manage and challenge myself to find solutions when I do falter. Being a mother means being honest with yourself and also being forgiving, understanding that there is no rule book to follow when it comes to bringing up children. Children are perfect, but there are tough moments along the way, and it's OK to recognise that and give yourself space to learn.
Advice to other mums
“If a mother were to find out that her child has Down Syndrome or, in the case of a prenatal diagnosis, suspected Down Syndrome, I would strongly encourage her to seek the advice of a sympathetic existing mother of a child with Down Syndrome. I can understand the hesitation as some mothers might feel pushed into believing it’s something they may not be ready for, but a non-judgmental mother can throw much-needed light on a condition that is highly misunderstood by the wider community. The Love Bugs is a support group I set up when Emilio was a few months old, and is a group of mothers all with babies under the age of two. We meet weekly with the babies and learn an enormous amount from each other.”
Find Johanna’s support group through Instagram at Love Bugs UAE.