Coping with a diagnosis: Advice for a new Mom

Kendra left this comment on my post:   Things I’ve learned from being a special needs Mama.

Hi, I stumbled onto this and felt that I could relate to you the most… My daughter Livi just turned 4 weeks and I feel horrible because she doesn’t have any major health issues due to Down syndrome. But I’ve still having a hard time adjusting and I hear and read everyone elses stories and I’m so annoyed that I’m still feeling sorry for myself!!! Is yours a son or daughter? and how old? I just keep panicing and fearing the unknown i feel like Dr. Gloom to just enjoy her good health, but then I keep telling myself there has to be more complications from it!!!! Thanks for listening! Kendra

I didn’t want to let this go unanswered.  It’s important to acknowledge these feelings and understand that not only are they normal, but that parents work through these feelings in their own time and in their own way.

And that’s okay.

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I may be okay with Parker’s Down syndrome, but I’m totally NOT okay with his diagnosis of pulmonary hypertension.  The fear I feel from the ph has a lot to do with the unknown too.

I’ve shared the story about a friend who after being told her newborn son had Down syndrome climbed under her bed covers, head where her feet should have been, and stayed.

A couple of years later I got a Christmas card saying that if there were a cure for Ds tomorrow, she’d throw it down the drain.

What changed?

Time.

Experience.

Talking with other parents.

I’m hoping that those who read this post will take a minute and share with Kendra your first days with your child’s diagnosis.

 


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