July 8, 2013 at 10:44 pm | Posted in Grief, Jake, life lessons, Love | 5 Comments
Tags: , , , , , , , , ,

quote - adjust

In May of  2005, Evan and I had the nuchal screening of our first child.  We were told that there was a 1 in 5 chance that our baby had trisomy 21, Down Syndrome.  Friends told us their tales of false positives with the nuchal screening but after a follow-up test it turned out that we were the 1.  The day that we got the results Evan had an awful migraine.  He went to bed.  I cried on the couch with our dogs.

I knew that I would continue the pregnancy.  Evan was not so sure because he needed to know more about Down Syndrome.  He questioned his ability to parent a child with disabilities.

We recently watched Perfect.  Have you seen it?  It is a segment on ESPN’s show E:60 about a father and his down syndrome daughter.  Heath White, a successful runner and businessman, wanted perfection.  Down Syndrome was not part of his plan.  However, his daughter Paisley changed his mind and heart.  He wanted to tell his story to the world. He became an advocate for Down Syndrome children.  Heath decided to run with Paisley.  He pushed her in a stroller for a total of 321 miles.  The number is significant because Down Syndrome is an extra (a 3rd) copy of the 21st chromosome.

Heath White spoke about grieving once he found out Paisley’s diagnosis.  Evan and I also grieved that day in May, 2005.  Although, looking back now it was just a preview of all the tears to come.  Perhaps all parents of Down Syndrome children grieve the loss of the “perfect” life they hoped for their child.  However, Heath learned from Paisley the true meaning of “perfection”.

We never had the chance to raise our Down Syndrome child.


RSS feed for comments on this post. TrackBack URI

  1. Lanie, what a beautiful message on finding “perfection” in every child.

  2. Beautiful message, Lanie.

  3. I definitely want to see that Perfection. What a great message. I plan on watching that…thanks.

  4. Saw it–very inspiring. Just as your post is as well.

  5. I want to watch, but not without kleenex. xo

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

Blog at
Entries and comments feeds.

%d bloggers like this: