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March 21, 2019 ·

Dear Ds Mama – What I Wish I Would Have Known….

Down Syndrome· Ds Awareness & Advocacy

Being a Mama is exciting, and scary, and joy-filled, and tear-filled, and exhilarating, and exhausting, and so much more! Being a Mama to an awesome kiddo with Down syndrome is no different. Sometimes the emotions are more intense – our fear of failure or illness is more consuming, our joy of milestones met is intensified by knowing all the work that went into meeting it!

As I look back at the last 12 years since we had a prenatal diagnosis with Peter, there are things I wish I could go back and tell myself. Until we are capable of time travel, let me tell you what I wish I would have know with the hopes that it will fill a small spot of doubt in your heart.

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!”

I also wish I would have known….

  • no one really expected me to be a super-mom
  • I would learn how to be stronger – when being strong was the only choice I had
  • that I was capable of learning (and doing) so much medical “stuff” – we are capable of so much more that we think when our kiddo needs it
  • how to lean on others
  • that I was enough….

Every kiddo, every Mama, every family is different.

Different is beautiful!

For many of us the journey is unexpected, but I now know too that it is also packed with so much more joy and love! You’ve got this Mama!

xoxo

Catherine

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