Amazing, how long it takes to write 97 words. Ten days of near-constant brainstorming, while driving, washing dishes, walking, putting kids to bed, lying awake, showering… And that’s a quick write, for me. But it’s done now, and I get to go on to the fun part—writing out the musical arrangement.
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I spent this weekend focused on song text and special needs. There are some local issues that, while they won’t affect our family directly, have set my blood boiling. So I’m working with a group to advocate for kids with special needs. I was asked to write an introductory paragraph that gets people’s attention without ticking anybody off. “Oh, sure,” I said blithely. “I can write a couple of sentences in ten minutes!”
Uh-huh. Two days and a dozen attempts later, I finally got it done.
Nicholas turned 4 months yesterday, and as I was thinking about how quickly the time is passing, I was astonished to find that I remember Julianna’s birth with far more clarity than Nicholas’s. 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.
Over the weekend, I learned that a friend has a prenatal…not so much diagnosis, as suspicion, of DS. Or at least, some “chromosomal abnormality.” As we talked, I tried to remember what it felt like to be in her place. And I realized that she didn’t need information; she needed affirmation. The most important things 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. It 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 making 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.
Kathleen M. Basi 