Friday, October 10, 2008

Ellie's Sister

I am often asked about how we have explained Down syndrome to Ellie. At her age, it would be unrealistic to try and explain chromosomes. We could talk about how her sister is "different," or the challenges that she will have in her life. However, we have chosen not to do so.

If there is something I really want for my daughters, for Ellie in particular, is for her to see Nichole as her sister, and nothing more. I want them to play together, laugh together, and be friends. The last thing I want is for Ellie to look at her sister as "different."

We have said a few things, like it will take Nichole a little longer to grow-up. Ellie accepts it. She does not care that her sister is taking longer to grow up. After all, how would she know the difference?

We do not talk about how Nichole is different, because Nichole, and all children with Down syndrome, are more alike other children that they are different. Instead, we talk about all the things that they can do together, and the things that they will be able to do as they grow up.

Someday, Ellie will start to notice that her sister is not like everyone else. I am aware that someday, Ellie will start asking questions about her sister. It breaks my heart to know that Ellie will start wondering if her sister is different because of other people. Someday, she might hear someone say something about Nichole, that she is "slow," that she "can't talk well,' or that, "she is retarded." (If you have not read my post on Down syndrome and health, PLEASE do so)

One of my dreams for Ellie, is simple. That she will love her sister. I want Ellie to be an advocate, I want her to stand up for Nichole. Most of all, I want her to want her sister. I know maybe some day, Ellie could be embarrassed of Nichole at some point in life, and I cannot tell you as a mom how hard that would be.

Are we going to tell her that Nichole is different? We will, and when we do, this is what we will say.

Your sister is different. Many people think that she is not perfect because there are some things that are harder for her, or she is not very good at. They think those things are bad. But, there is something all of those people do not know, but we do.
Nichole is different, because God knew our family needed her to be this way. She is different because she has a big heart, a heart that can love better than any other. Her eyes are different. She is able to see people the way God sees them, regardless of who they are, what they look like, what they smell like, or if they are popular or not. She has a harder time talking because what she has to say, she can say it with a hug, with a smile, with a kiss. What she has to say is that God's love is abundant, and pure, and real.
She seems not to be as smart as others, but in reality, she is smarter than most of us, because she knows about what really matters in life. She knows all about love, joy, peace, kindness, gentleness, goodness.
Your sister is a very rare gift to this world, and God has chosen us to be her family. We are so lucky! God will bless you so much because she is your sister.

Before Nichole was born, I was excited that our girls would only be two years apart. I pictured them being best friends forever. Doing all sorts of things together. Like I have shared before, this was the hardest dream to let go off. As a matter of fact, I still have to continually let go of it, I would be lying if I said I don't think about that anymore.

But there is something I do know. Nichole is the best sister Ellie could have. God knows exactly what He is doing. Because of Nichole, Ellie will have a bigger heart. Because of Nichole, Ellie will learn to see past the outer shell of people and look into their hearts.Because of Nichole, Ellie will know how to love unconditionally. A "typical" sister, would not change her life in this way.

They will play together, laugh together, and be friends. As a matter of fact, I really do believe that the will always be friends, always best friends.

There are two other little girls with Down syndrome in our church. Ellie loves them both. She wants to play with Ryley because she is a "big girl" and she is fun (and has a pretty cute brother). The only difference Ellie sees in Ryley is that she cannot talk as well, but she knows it is because Ryley has a big heart that loves a lot. She knows Ryley loves her, and that is enough for Ellie. And there is Jennifer, one of her best friends. There is nothing different about her.

And Nichole...Ellie will tell you in the future, there is nothing different about her either!

And in the small ways that she is different, I hope someday Ellie says, "I want to be more like my sister." And, "She is my closest friend."


  1. What a great post!!! I am sure Ellie and Nichole will ALWAYS share a very sweet bond..and Ellie will be an even deeper, more compassionate, and more beautiful soul herself by being blessed with Nichole as her sister! I do understand the pangs you feel though of wondering how their relationship will be. Our 2 boys are 5 1/2 years apart and our oldest, Luke, prayed for years for a baby brother or sister...I was so afraid of how he would handle the news. We, like you have given him little bits of information at a time about Down syndrome...but he sees nothing but his "best, best buddy" as he calls him. Luke loves his brother Reid dearly and I can already see the depth in him that is starting to grow due to his baby brother and his extra 21st chromosome. Luke knows almost everything now about Ds..and it doesn't phase him a bit!!

    By the way...with both of our pregnancies if we were going to have a girl her name was going to be Ellie! (Still in the running as a name if we're ever blessed with a little girl!) :)

  2. Beautiful, beautiful post. They will be best friends forever and they will do so much together and share their lives together. They are blessed to have each other and to have you as a parent.

  3. I found your through Cheri. I love your site. I think your daughter is about the same age as mine. My little Sydney is 15 months old and also share has designer genes. Sydney has two older brothers who are 4 and 8. The 8 year old knows all about DS because we had a conversation about it when she was 3 months old. We waited for him to be head over heals in love with her first. He was fine and we moved right along. The 4 year old knows that she has Down Syndrome, but doesn't really "get" what it means. And frankly he doesn't see her as any different.

    I just cried my way through the last few posts on your blog. I am going to come back and read more when it is not close to midnight. I love your faith and see so many similarities in our thought process. What a beautiful family you have, inside and out.


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