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.
#2 is so good…even though I don’t have a child with special needs, I can imagine that that would be really reassuring to hear!
With my son’s autism, first we knew he was clingy, stranger adverse and loved routine; then we realized he had a speech delay. Next, he was diagnosed by the school system as “developmentally delayed and possibly cognitively impaired (but I had observed that evaluation and didn’t trust much of it). Next came ADHD and then sensory integration dysfunction. He was eight before someone put it all together as Aspergers and told us that 1) it was the diagnosis of the week–ie a trendy thing to label kids 2) you treat the symptoms (which we were). By the time the “A” word was said we had been living with it for so long there was no surprise or shock, and unfortunately, no fix either.
Yes, autism is a different experience, that’s for sure–and in many ways, probably harder than mine.
I know that when Daniel was born, it helped to hear from other preeclampsia moms and moms with preemies because they had been there and survived.
I can’t handle more than one day at a time. I do tend to forget yesterday. Old age has it’s blessings. Theme song? O yes, “Onward Christian Soldiers
Wonderful post. I can only imagine that your support has got to make the difference in the new parents. Did you have that kind of support? I can see that #2 would be really helpful and reassuring.
Thanks for sharing this.
We had a little bit from parents who had been there–one in particular–but it is hard to make those connections due to privacy laws. That’s why I’ve been so passionate about trying to facilitate them from the other side! Most of our support came from therapists and family members, who had a different role to play.
After having read so many of your posts, I think that your most important apostolate is to bring hope to those with Down and other DNA issues. You think and write well, and have the compassion necessary. Imagine how many babies can be saved from abortion if there were more like you out there.
Well, I hope so. Thanks, Barb.