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Sunday, July 11, 2010

Have you ever been...

We recently attended the Cornelia de Lange Syndrome National Conference in Dallas. There is only one word to describe this experience...amazing. It was so good to be with people who know exactly what you are going through. Who understand what it's like to walk in your shoes. And who support you and love your children exactly the way they are. To those of you we met in Chicago in 2008, it was such a pleasure to see you again friends. To those of you we met for the first time in Dallas, it was awesome to meet you and we look forward to long lasting friendships. And to those of you we didn't get a chance to meet yet, we are already looking forward to the Chicago Conference in 2012. The following is a poem I wrote to celebrate the CdLS Conference, the great friendships that were formed, and the wonderful memories that were made.

Have you ever been
to a wonderful place
Where all you need to get in
is a beautiful face?
Long eyelashes and
an upturned nose
Small hands and feet
there were plenty of those!
Eyebrows that meet in the middle,
developmental delays
Feeding difficulties and reflux
all cared for in different ways.
Thin downturned lips
all lifted up with smiles
To get to this place,
families traveled for miles.
Because once they get there,
they are welcomed and hugged.
And while they are there,
they know they are loved.
No shirt, no shoes
no problem at all.
Moms to the rescue
when diapers explode in the hall.
Feeding tubes and wheelchairs;
babies scooting on the floor.
Families sharing stories,
new found friendships galore.
No one pointing and staring
or giving you "the look"
No need to explain -
you are off the hook.
Your child is my child
we share sorrows and joys
There is so much in common
with our girls and our boys.
Words of wisdom are offered,
as well as comfort and advice.
You will find encouragement and support -
a shoulder to cry on if you like.
When you are at this place
we'll call CdLS town,
Your spirits are lifted -
there is never a frown.
You wrap love in your heart,
your soul is renewed.
Everyone understands
and your worries are few.
So when you are struggling
and feeling alone
Let the memories of this time
comfort you at home.
Have you ever been to this
wonderful place?
I have -
and I will cherish each and every
Beautiful face.

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