Sunday, October 17, 2010

The Crystal Ball

At the time of our child's diagnosis, how many of us wished we had a crystal ball to see what the future would hold?  How many of us worried about how Down syndrome would affect our lives? 

But then how many of us felt the fear and sting (that came along with the diagnosis) begin to fade as we realized that Down syndrome was only one facet of our child?  How many of us have realized that Down syndrome has not been nearly the deterrent we'd thought it would be? 

We are the crystal ball for families with a new diagnosis.  All of the individuals and families already living with Down syndrome are the glimpse into the future.

I've written about how our reality is different from what I had first envisioned and feared, and I have read many other accounts from parents, grandparents, and siblings of what they wish they had known from the outset. 

Open Letter to Parents Facing a Diagnosis of Down Syndrome on Finnian's Journey, and A Conversation Between Me Then and Me Now on Raising Reid are just two examples of parents sharing what they have learned along the way.   And the booklet What Parents Wish They'd Known, published by The Segullah Group, is a lovely compilation of reflections on raising a child with Down syndrome.

I would like to build a list of pages or posts that would be helpful for parents with a new Ds diagnosis.  What have you written or read that should be included?  (Anything other than Welcome to Holland... which will be the subject of a separate post here).
Please leave a comment with suggestions or ideas! 


  1. I think that is a great idea! I'd love to put a page up with links to great articles that can help new parents.

    Here are a few from my blog:

  2. I don't have any suggestions because honestly I can't remember what I may have read way back when. :O I'll be eager to see what links you get, though.

    A humorous side note. My maiden name is Kristin Paul and when I attended an event one time, the leader called out my name as Crystal Ball. ha ha ha!

  3. Lisa, thank you for including my Open Letter on your list. I'm doing a series of posts this month, in honor of Ds Awareness Month, all aimed at both new parents of children with Ds, as well as the general public. You're welcome to use them (I have a few more planned before the month is over).

  4. Love your idea- Here's a few from my blog:
    Hope they are helpful!

  5. I love this idea. Here is one from my blog about expectations, how how things ACTUALLY are...