There are moments in every life that I call “precipice” moments, when everything is turned upside down and you find yourself reeling at the edge of a proverbial cliff. It’s actually a physical sense, this loss of balance. The feeling that everything you once knew to be true cannot be trusted; you have very little to hold on to and feel certain of. You’re stuck in the moment in a way that is entirely unique to the precipice, and for that reason, you can recall certain details–a smell, what you were wearing–as if they are present, not memory.
The moment you find out your child has special needs is one of those. You find yourself returning to that moment again and again for years to come, wrestling with the emotions you felt then, and which surge upward again as if they’re brand new, no matter how much time and emotional distance has passed. You keep thinking someday you’ll stop remembering, but you never do, because the fact is, this is a pivotal moment in your life. Pivotal in the sense that the direction of your life is shifting upon that point in time.
In the past twelve months, our local Down syndrome family network has begun reaching out to hospitals, and we have been able to connect with families receiving a diagnosis of Trisomy 21. I feel blessed to be able to interact with people standing at that point, because here, I know I can help. I know what is needed is affirmation.
It’s always a doctor who delivers this lightning-bolt, and yet the most important things the families need to hear when receiving a diagnosis of Down syndrome are not medical. That stuff goes flying over your head; in the first hours and days, there’s nothing in your brain but this stark raving terror screaming over and over, “I CAN’T I CAN’T I CAN’T I CAN’T I CAN’T NONONONONONONONONO!” Just to filter that out enough to carry on a normal conversation is no easy task. The effort required to understand medical jargon is nothing short of epic.
There are only two things a new parent needs to hear, and unfortunately they probably sound condescending except from the lips of someone who’s stood in their shoes. So I share them today in the hopes that this post might reach someone who needs to hear them:
1. It’s going to be okay.
2. A newborn is a newborn is a newborn. A baby with Downs is not born delayed. He or she starts in exactly the same place as every other newborn. All babies are helpless, all babies do nothing but lie there, sleep and eat and make diapers. This is a universal truth that applies to children with Downs, too (barring some immediate medical emergency). Delays are a topic for later. That’s the beauty of God’s plan. If, at the moment of our children’s births, we knew everything that would ever cause us grief, none of us would be able to handle it. Delays, medical issues, and understanding unfold slowly, in manageable bites. Even if it doesn’t always feel that way. So take a deep breath and parent this baby one day at a time.
October is Down Syndrome Awareness month, and a lot of bloggers participate in “31 for 21,” promising to post every day on Trisomy 21 and related issues. I think I might even burn myself out if I tried that, to say nothing of you fine people, so I’m just going to devote Wednesdays to the topic of my darling girl. This post is adapted from one originally shared July 20, 2009.