Recently I read a great post by the wonderfully witty Mind the Baby, where she gave the ultimate piece of parenting advice. It got me thinking. If there was one bit of advice I would give to parents,what would it be? Then I started thinking about parents like me,whose kids have Down syndrome or other intellectual disabilities. And the one thing that stood out for me was this-
Time. You need to give it time, and not only to give yourself time to get used to the idea that your child has what society calls “special needs” but also to not be too weighed down by the passing of time. Yes,your child may not walk before the age of 4,may not speak before the age of 7,may not be potty trained before the age of 11,but it will happen.Someday,after months,if not years of waiting and hoping and praying and a just a little bit of “why us?” you will wake up and something will click and your child will have mastered something extraordinary.
Something her sibling may have gotten straight away,but nonetheless your child has finally mastered and you will both progress to the next task,the next level,and all the practicing and hoping and praying and “why me?” simply melt away into the shadows of the dazzling light of your child’s new achievement.
This week I was reminded of that thing called time by reports of an Australian couple who pursued an avenue of surrogacy in a foreign land,only to leave one of their babies behind. On discovering that the Thai woman they had chosen to act as surrogate had received a prenatal diagnosis of Down syndrome in one of the twins she was carrying ,they requested her to pursue a termination. She refused and has now been left holding the baby, a little boy called Gammy,who has a congenital heart defect and a lung disorder,while the other twin,a healthy and non special needs child, has been taken by the couple to live with them in Australia. I don’t profess to know their circumstances. I’m not here to judge when I don’t know the full story,just what’s been reported in the news. I don’t believe them to be quite the monsters the mainstream media would have us believe. According to a 2012 report from the Global Down Syndrome Foundation, approximately 67-85% of babies with a prenatal diagnosis of Down syndrome are aborted. It’s an uncomfortable figure but are these millions of other parents vilified for their decision?I think not.
It’s an incredibly sad story for all involved. The fact is though that if the twins had been carried by their Australian mother, that baby would have been just another abortion figure and nobody would have batted an eyelid. Having a surrogacy involved makes the children look like some kind of commodity and makes the parents’ rejection of their boy seem like a refusal to purchase a defective item.Seeing those terms being applied to children makes it appear so very wrong. Down syndrome still scares a lot of people. It shouldn’t be that way but unfortunately it is and you need time to accept the situation.
I firmly believe that this couple are guilty of not giving themselves enough time and of not allowing their minds to fully process the information. They saw trouble and strife ahead and a harder path to travel.But in truth,all parenting journeys,even those with “normal” children are long and winding with their own dips and peaks.
I know what they felt because I felt it too.Shock, pain,disbelief. I felt as if the birth of my daughter born with Down syndrome was not something to be celebrated. She was born at 1.43 a.m. Her diagnosis came approximately twenty minutes later. There were friends and family waiting on a text or a Facebook update from me. They knew I had gone into labour and was at the hospital. I didn’t sleep for the rest of that night. In the morning I took a deep breath and sent the text I had always wanted to send but deep down didn’t feel to be true.
Baby girl, born 1.43 am, 7 lbs 8 oz.Mammy and baby doing well.
I didn’t believe all was well.How could it be?The future seemed so uncertain.
I was a shell of a woman, in floods of tears,unable to move forward,paralysed in that very moment,unwilling to give myself time,unwilling to give my daughter time.
But of course she won me over.And it really didn’t take long for my entire mindset to change.But I needed the time,to get to know her,to get to know myself as a new parent and find out what I was capable of. I think of these new parents now half way across the world,having left one of their children behind in a foreign land and I wish they could have seen that sad,shell of a woman just three years later. Chasing her daughter around the garden,laughing and whooping as this little girl went ducking and diving, running and jumping; filling the summer air with peals of jubilant giggles. The little girl is still in nappies,she still has few words, the potty training is more than a work in progress. There are days when I feel as if it will never happen.
But then I remember all the other times I have waited. Waited for Mini to take her first steps, sign and then speak her first words, for that first glorious “mama” to trip forth from her cherub lips, for nursery rhymes to be learned and dance routines to be perfected, for every kiss,every cuddle stolen in the faint glow of dawn,while the rest of the world slumbers on. All of these wonderful things that have happened and I know there are so many more wonderful moments to come.
One day this couple may be chasing their daughter around the garden,and it will come to them in a flash-the feeling that something is not quite right and the spectre of her twin will hang over them. He is the boy who should be laughing along with them but who they have left behind. He might not have been as sure on his feet as his sister or been as vocal as her,or understood as much as she but he should be there as the brother of their daughter ;their son. And that grim thought will hurt far more than the decision to give him up. An “imperfect” ghost,he will haunt them for years to come. It could all have been so different,if they had just given him, and themselves some more time.
And for us parents who chose the path less travelled,we will continue to enjoy the positive fall out from this story while showing the world the many varied things our kids with Down syndrome are capable of.