Monday, November 23, 2009

Take My Hand...

So An Open Letter to Parents Facing a Diagnosis of Down Syndrome by Lisa Morguess of Finnian's Journey is now available on Mamapedia. For all the parents who are raising children with Down syndrome, and for all the parents who will be walking in our footsteps, this is awesome news. Please read it if you haven't already, and pass it along.

I was struck by one of the comments about Lisa's letter on the Mamapedia site:
Thank you, Lisa, for writing this. It is one of the most accurate articles about Down syndrome I have ever read. I have a grown son who was born with Down syndrome 26 years ago and wish I could have read your words when he was brand new. My son was in kindergarten when I wrote "Thoughts from the Middle of the Night" - It was meant to be a Thank You note to families who paved the way for the opportunities they created so he could show us his true potential. This Thanksgiving I will keep your words in mind as I celebrate the gratitude I feel among friends and family for my life and his. I feel so thankful for all our sons and daughters, and for mothers like you who reach out to us all.
And this made me think about how we are all reaching--out for our children, and toward one another--finding our way along this entangled and enchanted path.

I'm giving thanks, too, for all of it.

Here's an excerpt from the piece mentioned above (click here to read the rest of the story):

Thoughts From the Middle of the Night

Pamela Wilson

When my son was born and I was told he had Down syndrome, I did not cry for a long time. But when I saw a girl walking hand in hand with her little brother to the viewing window of the hospital nursery, I could not hold back my tears. I knew my daughter would never walk with her little brother that way. I knew he would never experience the small pleasures of life I always took for granted. In those minutes my heart was broken and I was overcome with sadness for both my children.

Now, almost six years later, I am filled with pity for the misinformed, heartbroken woman who sat crying in that cold hospital corridor, without hopes, dreams, or fight in her. She was wrong about so many things. That part of me continues to be reeducated: I am grateful for every new lesson I learn.

I am thankful to that woman. She found she did have some fight in her. She was not the first mother to fall in love with her newly-diagnosed child. She learned of brave and stubborn mothers who put themselves forward in the media to spread a message of hope. She let the memories of those mothers stir her into action. I shall always revere the mothers and fathers who reached out a hand, and who built a foundation of support, information, and resources for women like me to draw upon. What they did for their children transformed my son's life. They continue, still looking forward, always reaching back to help others.

I still reach back to the woman I was. I hold her gently and wish that in her grief she could hear me. "It's not like that. Please don't lose yourself in that sadness. Hold on, wait and see. So much of that grief is over things that are just not true." I know she has to sit there crying, and I don't know how long. I will wait with her and be a friend...


  1. I feel exactly that way- I love to take people's hands and show them that it is okay. That is a beautiful excerpt. I will go and read the rest too!

  2. Thanks, Lisa. This is wonderfully articulate and I couldn't have put it any better...I only wish I had read it when I first started my journey with Lucas. I will post on my blog too.


  3. Beautiful. I'm gonna go back and read the whole thing (on the links provided). My son does not have Down's syndrome. He has a very different syndrome called Apert syndrome and there is often great sadness following a diagnosis of Apert syndrome too. I am also reaching out.

  4. Lisa,

    Just wanted to say HI....always love your posts!

    Happy belated Thanksgiving! Hope to talk soon. xoxo, Andrea