Some expectant parents like the element of surprise and so choose not to find out the gender of their baby. For them, the ‘reveal’ at birth adds to the excitement of the day, while family and friends wait eagerly to hear the news. Is it a boy or a girl? What is the name? Then there are others, like myself, where the gender is known from the beginning, but a much bigger surprise awaits at the birth – the existence of an extra chromosome.
The birth of your child, be it your first or your fourth, should be a momentous day filled with an immeasurable about of joy and excitement. However, with the birth of Nicholas and the diagnosis of Down syndrome thereafter, the day did not quite go as planned. I did indeed feel an enormous amount of love for this little person, as this was the child I had bonded with and whom had been a part of me for eight months. But on the other hand, I also experienced shock, uncertainty and grief.
I grieved the child I expected to have. My hopes and dreams for him were now beginning on a different path, one that had completely caught me off-guard. What I came to realise over time though, is that it is so important to give into your emotions, both negative and positive. And guilt must not play any type of role. Everyone will go through a different process, in order to reach acceptance. I read a quote by Tracey Johnson Buzzeo that sums it up beautifully: ‘grieving the losses is not incompatible with celebrating the triumphs’.
There are two pieces of advice I would like to share with new parents, embarking on the special needs journey. Firstly, when you receive the diagnosis, don’t immediately turn to Google and Wikipedia. Yes, you will find knowledge on the cold, hard facts of your baby’s diagnosis, but in no way can it prepare you or educate you on your baby specifically. Most often than not, you will read about ‘worst case scenarios’ which probably won’t apply to you at all. Every baby is different and every baby with that specific diagnosis, is also different. My husband and I made the mistake of turning to the internet five minutes after the news was broken to us and it was just petrifying. We read that Nicholas would probably have a heart defect, a thyroid problem, have a higher chance of being diagnosed with leukaemia and would spend his last few years on earth, with Alzheimer’s. In no way did this information help us to deal with a newborn, just one hour old.
In the next couple of weeks and months as we digested the news, I focused on reading stories told by parents who had children also born with Down syndrome. And this filled me with hope, because I knew that there was so much joy to be experienced. I realised that it was in the best interests of Nicholas and us as a family, to take it day by day and not worry what could happen in the future. Be aware of the risks, do the necessary check-ups and deal with issues only when they arise. We discovered that Nicholas did indeed have a heart defect and open heart surgery was necessary at four months of age. Thankfully, the surgery was a success and he has been healthy ever since. Worrying about things that may never actually happen, is just cause for unnecessary stress and anxiety.
The second piece of advice is don’t compare your child to anyone else. We are all unique, each with our own set of imperfections and abilities. Yes, a child with special needs may take longer to reach certain milestones than his or her peers, but putting pressure on them and on you as a parent, really doesn’t help matters. There is no trophy at the end of the day for the parent whose child is ahead of the pack. Celebrate those achievements, big or small, when they happen. The ultimate reward is sharing in your child’s joy, when they accomplish something that they have worked so hard to achieve.
