Wordless Wednesday

03.02.11

03.02.11. Today is the official awareness day of the nationwide campaign to end the hurtful use of the “r-word.” Let's spread the word about how we can encourage acceptance of people with intellectual disabilities and discontinue the derogatory use of the r-word in our schools and communities. Our son Joey was born with Cornelia de Lange Syndrome. Take a moment to look at all these beautiful faces and let's promote the use of the new r-word: Respect.














I've taken the pledge, have you? Join me in supporting Spread the Word to End the Word. It's time to put an end to hurtful and dehumanizing language. Take the pledge to end the r-word by clicking here.

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.

Today is CdLS Awareness Day

Today is Cornelia de Lange Syndrome Awareness Day. Today, and every day, we celebrate all of the beautiful children in the CdLS family circle and all of their amazing accomplishments. Please take a moment to view the above CdLS Awareness Video. Visit the CdLS Foundation website to learn more about Cornelia de Lange Syndrome. With your help, we may be able to find one child and one family that may be seeking answers and need support. I am an awareness coordinator for the CdLS Foundation ~ something I greatly enjoy. Today I am sharing with you the reasons why I became an awareness coordinator ~ and why it is so important to reach out and let families affected by CdLS know they are not alone.

Our son Joey was born in 2004 and diagnosed with Cornelia de Lange Syndrome (CdLS) soon after. Since his birth, my family's lives have changed dramatically in many ways - many of them good ways.

Even though therapy sessions, doctor visits and special education services have become our lives, our normal, we have been blessed with a gift more valuable than we could have ever imagined. Joey has taught us so much about life and love; he has lifted our spirits and enriched our souls.

He also inspired me to become a volunteer awareness coordinator for the CdLS Foundation. There are so many important things to learn and share about CdLS. My family has chosen an open and honest approach when sharing information about Joey's condition. The more people learn about CdLS, the more comfortable they are around Joey, and that is beneficial to him.

The CdLS Foundation provides information, support and the materials I need to promote awareness in my community through various activities. Educational awareness about CdLS is such an important step towards understanding and acceptance. It is also very important to let other families know they are not alone in the daily challenges of raising a child with CdLS. I know firsthand that it helps to know there is a huge network of support available.

And finally, I became an awareness coordinator for the CdLS Foundation because I want to let people know it is okay to have a child with special needs. It really is okay. We don't seek sympathy. We don't have to be embarrassed or remain secluded. We just want the world to accept our children for who they are, for the good things they have to offer, for the smiles they create, and for the hearts they capture. Becoming an awareness coordinator has been one of the most important, and best, decisions I have ever made. Promoting awareness about CdLS gives the the strength and courage I need to be a strong voice for Joey and all children with CdLS.

CdLS then... and CdLS now...

Six years ago today, a beautiful baby boy was born. We named him Joey. He had lots of hair, tiny hands and feet, and the faintest little cry. He was everything we had hoped for and more. We loved him and he loved us. That's all we needed. And then our world came crashing down. There was something wrong. We did not know it at the time, but we were about to become very familiar with the words Cornelia de Lange Syndrome. CdLS. Six years ago, the letters CdLS were very scary and packed a powerful punch. They meant Challenges. Not just the normal Challenges parents face when bringing home a new baby, but challenges you never thought you would have to face in your life. The Challenges of raising a child with special needs, the Challenges of an uncertain future, the Challenges of telling family and friends something is wrong with your baby and the Challenges of juggling numerous doctor's appointments. Wondering what kind of Challenges Joey would face in his life. The letters CdLS also brought Denial. Of course no one ever wants to believe there may be something wrong with their child. Sometimes it's easier to think there's not than to face up to it and deal with what is happening. I spent a lot of time in Denial ~ we couldn't get any clear answers about Joey for quite awhile so I figured if no one could give us a diagnosis he must me okay. Right? Wrong. Denial was my enemy ~ it kept me from getting the answers I needed, the help Joey needed. But once I decided to leave Denial behind and worked through my grief, good things started happening. Good people entered our lives. Some answers were found ~ we were on our way to the most amazing journey of our life. 6 years ago, we were also Lost. We couldn't find direction ~ wandering aimlessly through life knowing in our hearts something wasn't right but letting our heads keep telling us everything was okay. Being Lost is scary. Being Lost is overwhelming. Being Lost means we are alone. It's frightening to feel helpless and Lost. But we are lucky ~ we found help and support and now know we are not alone. You know Amazing Grace ~ the line about "I once was Lost, but now am found"? That is so true for us. We were also full of Senseless, unanswered questions. Why is this happening to Joey? Why is this happening to our family? Will he be okay? Will he live? Die? We couldn't make Sense of any of it. We couldn't wrap our heads around it - couldn't grasp what was going on. Challenges, Denial, Lost, Senselessness. This is what we thought CdLS meant. But once we decided to face CdLS head on, these letters took on a new meaning for us. The feeling of helplessness and hopelessness lifted. Today, for our family, the letters CdLS aren't scary anymore. They are for new things ~ good things. Now we have Courage. Courage to face all the challenges that go along with raising a child with disabilities. Courage to stand up and let people know it's okay to have a child with special needs. Courage to have strong voices. We've learned a lot about Courage from Joey. He's shown it every day of his life. We also have Determination. We are Determined to have Joey get the help he needs. Determined to keep seeking support and raising awareness about CdLS. Determined not to let the feelings of hopelessness and helplessness ever return. And Joey is very Determined to reach his goals and be the best he can be. Love is also with us. It is unconditional and keeps us going through the tough times. Joey has taught us so much about Love ~ his smile, his laugh, his heart ~ he is so full of Love and shares it with everyone he meets. Love surrounds us. Having a child with disabilities helps us realize how blessed we are to have been chosen to be a part of the special needs world ~ Joey's world. We don't know where we would be without the Love and support of everyone we've gotten to know because of Joey. Today, we also have Strength. A strength we never knew we could possess. My husband summed it up best today when he said (via his facebook status this morning):

"Dear Joey, Happy 6th Birthday today son. When you were born, I was convinced that I wasn't strong enough to raise a child with special needs. After watching how hard you work and how far you have come, I have changed my mind. I am a better father and a better person because you came into our lives. Your mother and I are proud of you and love you very much. Keep working hard. Love, Dad."

Now, my turn...

"Dear Joey, Happy 6th Birthday today son. Today, we celebrate you and all you have accomplished. We celebrate all the joy you have brought to our lives. We celebrate today because it marks the day God thought we were worthy enough to be blessed with such a special child. You have shown us the way and guided us into a wonderful life and for that we are grateful. You are the best teacher I have ever known. Your dad and I and your brothers and sisters are proud of you and love you very much. Keep up the good work. Love, Mom."