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Monday, April 26, 2010

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."


  1. Ahh Rachelle you are such a gifted writer and do such an amazing job and telling your story! I love your candidness and I know for a FACT that you have helped other families understand that their feelings good/bad are okay and part of the process! You are so amazing!

  2. Maybe it's the pregnancy hormones but I'm crying. That was really beautiful. I just get so overwhelmed thinking about how much it means when our kids accomplish things -- things big and small. You should be SO proud of all that Joey has accomplished in 6 years and you are. Amazing!

    Anyhow, thanks for the beautiful post. CdLS does take you on a pretty profound journey but we wouldn't be who we are without it.

  3. OH Rachelle! You made me cry, once again and it 6:30 i the morning!. I love that little guy. He has brought light to many.
    You should be a minister. Your words are profound. Take care.


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