Saturday, July 11, 2009

Growing up with a sibling with Down syndrome

When I was pregnant with Nichole, I would find myself daydreaming about the future. Ellie and Nichole would only be two years apart, and I always pictured them as being best friends. I imagined them walking the halls of their school together, having friends in common, and maybe even chosing to room together in college. When Nichole was born, I had to face the fact that my dreams might be different. We do not know what the future holds for Nichole, we do not know how much she will be able to do and how much she will surprise us.

The truth is that many of my dreams have changed. Some dreams I have had to grieve; some dreams are new, different, and in some ways even deeper.

Last week as we were walking we saw a little girl that is younger than Nichole. She can walk and say some words. Ellie commented that her sister Nichole cannot do that, so we talked about the fact that Nichole might just take a little bit longer to do things. I wondered how Ellie felt about this, so I asked her, "If you could choose anyone to be your brother or sister, anyone in the world...who would you choose?" She smiled and said, "I would choose Nichole, I would not want anybody else to be my sister, I love her so much." She reached over and held Nichole's hand, pulled her close and gave her a hug and a kiss.

Ellie is very little, and I wonder what it will be like for her growing up. Then I think about my friends Lisa and Julie, they have a brother with Down syndrome. He just had a birthday and well, I will share with you their posts...

Tribute to the Birthday Guy

On Christmas Day 1981, my parents announced that they were expecting a baby! That was BY FAR the most exciting Christmas gift I've ever received to date. The following July 5th, our grandparents woke us in the wee hours of the night to announce the arrival of our baby brother "Stephen Lawrence". I still remember how I felt. It brings tears to my eyes as I think about that moment. I can honestly say that I had no idea just what having Stephen as my brother would mean in my life, and the lives of those around me.

Today is Stephen's 27th birthday! This young man is my hero and my friend. I am so proud of the young man he is. I wish I were more like him. God has given Stephen so many wonderful qualities. Anyone who has spent any time with Stephen knows what I mean. As I look back on my life, I realize that God used him specifically in my life in amazing ways. He was the ultimate "test" for any guys Lisa or I would consider (before we got married)....yes, Peter and Jim both passed the "Stephen Test". When Stephen was born, he was in the Neonatal Intensive Care unit for a few days, and that ultimately brought me into the Nursing field and to the NICU. He has inspired Lisa and I to adopt children with Down syndrome. Above all else, he has taught me about priorities. My sister posted about Stephen's birthday as well, and I am proud to be a Ds groupie, just like Lisa :) Please visit her blog to see some of her insights. She is very good at expressing things I often can't find the words for.

A Very Special Day

27 years ago today my brother Stephen was born. We were all so excited to have a new baby in the family. He came with an unexpected extra chromosome (Down syndrome). I'm sure it was shocking and hard for my parents to accept at first, but Stephen has proven to be the most wonderful gift God has ever given our family. He has changed us all and he's shown us what is really important in life.

Many people in the world feel sorry for Stephen or believe that the quality of his life is not what it should be, but Stephen's life is something we can all learn from. He has peace and happiness and he appreciates life like no one else I know. He is kind to everyone and always has an encouraging smile. He goes out of his way to help others and he looks at every day as a blessing.

It's funny, the world looks at "typical" people as the desired model, but I've learned that Stephen and his friends have something that the rest of us don't seem to have. Peace and happiness in agendas, no desired status, just genuine appreciation for life as it is. They are content to be themselves and they spend their energy reaching out in love to those around them.

As most of you know, Stephen is the reason that my sister and I have adopted children with Down syndrome. Since we met Stephen when we were 10 and 12 years old, we have had a great love for people who have Down syndrome. We often refer to ourselves as Down syndrome groupies.

Thanks, Stephen, for giving us the gift of your love and a new perspective that has changed our lives. We love you!!!! Happy Birthday.


  1. Ellie is one blessed little girl! Thanks for sharing our posts about Stephen.

  2. I loved the posts from Julie and Lisa and think what Ellie said was so sweet and will continue to be true over the years! If you ever get a chance to see Brain Skotko speak - he's amazing...such an advocate for people with Ds who obviously adores and is inspired by his sister who has Ds.

  3. What a great post. Here is another sibling blog...

  4. Thank you for posting our blog entries, Ellen. I have no doubt that God will use Nichole in Ellie's life more than you could ever imagine. Stephen sure has done that for me. Ellie and Nichole are blessed to have each other.


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