By Carin Bevan
“Congratulations”, the doctor said as he handed Jamie to us, “Your son’s perfect.” And we’ve been amazed to discover exactly how perfect. Now four months old, he’s turning into a little boy with a strong personality and some rather clear opinions: He loves baths, bells and shiny things, but hates the cold and isn’t too fond of tummy time. The dots and stripes on his blankets are the most hilarious things he’s ever seen. He has long and serious conversations with us and probably wonders why he’s only getting silly smiles and animal sounds in return. He tries to copy our expressions and we’re convinced he already says “hello”.
That’s our Jamie – beautiful, wonderful and absolutely perfect.
So when, a few hours after his birth, the paediatrician raised some concerns about Down syndrome, I was far more upset that he kept on referring to my beautiful boy’s “soft features” than any possible disabilities. To me it sounded like he was saying my child had “weak” or “bland” features, obviously not something a mother wants to hear. Nevertheless, when he asked if we wanted to do the blood test, we said yes. He’s the expert, we figured, but without any real worries. Apart from his slightly slanted eyes and small, low-set ears, Jamie showed no other signs of Down’s. He didn’t have low muscle tone (in fact, everybody remarked on how strong he is), he didn’t struggle to latch and there was nothing wrong with his digestion.
Two weeks later, the test results came. Jamie was diagnosed with Down syndrome. We were shattered. Our little boy was not perfect after all. We were in for a rough few weeks: on top of having to deal with little sleep, breastfeeding and hormonal ups and downs, we now had to deal with this new grief and anxiety.
Why were we so devastated? After all, we had made the decision not to do the prenatal tests for Down syndrome, especially since there was no way we’d abort if the test came out positive. I knew this was God’s will and that He didn’t make mistakes. So then why was I so incredibly sad?
The death of a dream
Before Jamie was born, I was convinced that my dream for him was a happy, healthy life and that he could be whatever, whomever he wanted to be. Which parent doesn’t want that for their child? I loved thinking that this is God’s child, that He’s merely lending him to us for a while. To be honest, it’s easy to say that when all the possibilities in the world are still open, when there are still no limits to what he can be or do. But when you’re faced with a chance that he may not even be able to finish school, let alone do well at it and have a successful professional career afterwards, you may realise that your dreams have not been as generous and unselfish as you thought.
I felt very ashamed one day as I looked at the guy packing our groceries and thought, “What if this is all that Jamie could ever be?” Even if he did it with the same enthusiasm and pride as this young man, would I be proud of him? I was shocked to learn this about myself. That despite considering myself a kind and modest person, it turns out that I could be this arrogant.
After reading some articles and blogs written by parents of children with Down syndrome, I learnt that these and other horrible feelings were very normal, that it was not unheard of for parents to have thoughts, however briefly, of “what a waste” or “there goes my own life”. Or “what if I can’t have another child to make up for this imperfect one?” This is apparently all a natural part of dealing with it. But as Christians we know that what is “human” and “natural” can be very far removed from what is godly and just. I wanted to look at my child – no, God’s child – in the same way I knew God saw him: as wonderful and worthwhile. I wanted to have a new dream for my baby: not the selfish, worldly dream I realised I’d had, but God’s dream, whatever that may be.
I clearly needed to change the way I saw Down syndrome, disabilities and the idea of “perfection”. I realised that I knew next to nothing about Down’s and decided to get educated.
Read the rest of this article, as it appeared in Radiant’s Sep/Oct issue, here, on page 33.