Ds Awareness Day#20: What I wish I would have known ….

As I considered how to start wrapping up our 21 days of Down syndrome awareness, I asked a few people what they wish I would have covered or shared. Not putting anyone on the spot, but they had no answer – hmm.   So I switched the question around, what do I wish I would have known about Down syndrome before Peter rushed into the world?

I wish I would have known….

  • just how many people were willing to support us in so many different ways, instead of feeling so alone with a diagnosis
  • people with Down syndrome, and just how unique they each are
  • what it meant to be a “good advocate” for your child
  • how much joy I would feel
  • how normal life would be, most days
  • that some days would be hard, but ultimately we would be OK
  • we would cherish and celebrate each milestone so much more, getting there slowly makes the moment so much sweeter
  • how utterly amazing it would feel to have Peter’s little arms around my neck and feel the warmth on my ear when he finally learned to whisper “I love you!”



“hmmm…what should I teach mama today?”

I also wish I would have known….

  • no one really expected me to be a super-mom
  • I would learn how to be strong, when being strong was the only choice I had
  • that I was capable of learning (and doing) so much medical “stuff” when it meant keeping Peter alive
  • how to lean on others
  • that I was enough….

Every child, every mother, every family is different. For more thoughts on what parents wish they would have known, I invite you to read these quotes from other parents at NDSC Center.

One day it may be you, one day you may be the person someone turns to when they have a diagnosis of Down syndrome in their family. I hope that what you’ve read over the last several weeks will help you in that moment. For many the journey is unexpected, remember that it is also packed with so much more joy and love!






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