Monday, March 21, 2011

Down Syndrome Has Changed Me

Dear Nichole,

When you came into my life, your diagnosis of Down syndrome threatened to crush my heart. That tiny extra 21st chromosome seemed too powerful for me to stand up against. I cried constantly, and I feared our lives would be covered with limitations. I wanted to wake up and find that you were a "normal" baby, that Down syndrome was only a part of a bad dream. But it wasn't a dream. You almond shaped eyes looked straight at me. Then one day, I thought you were looking not just at me, but straight into me.

I don't know how to describe this to you, so I will do the best I can. It was as if I had been dreaming for most of my life, and then you came in and you woke me up. Love, joy, and peace became almost tangible. I felt as if my eyes had been opened to the real things that matter in this world. Maybe I simply had a "weak heart" and then you showed up ready to fix it.

Not only did you awaken something inside of me; you changed me. God, using you, a little baby girl with Down syndrome, to touch the places of my life that needed to allow Him in.

I look at you now, and  Down syndrome, although it does not define you, is something in you that I cherish. It is something that I celebrate. I would not change a thing about you. Every single chromosome you have is absolutely perfect! You are exactly how God intended you to be, He created your inmost being.

Today is World Down syndrome day. Thanks to you, I realize the significance of this day because I know that Down syndrome is something to be celebrated, something that we could all use a little bit more of. I wish I loved more like you, and that I gave my hugs as freely as you do. I wish I celebrated others with the same excitement you show. I am blessed to have you my sweet girl.

Happy day to you my little rascal, and thank you for making ours happy because you are you!


  1. Beautiful post, Ellen. DS definitely SHOULD be celebrated! I don't know anyone with DS closely, although in January I met my best friend's older brother, who has DS, for the first time. The more blogs I follow about children with DS, the more I want to purposely be around these kids! Their unconditional love and zest for life is something that everyone should have! You are truly blessed to have your little Nichole.

  2. Hi Ellen!

    You don't know me, but I have followed your blog for quite some time. I knew Andy from growing up in the Alliance churches in Montana.

    I really just want to thank you for this post. You have put into words what I have struggled to for nearly 3 years. Our path is a little different from yours, in that we have autism, not Down Syndrome. (And not that one is worse than the other...I've long since decided not to give into that trap!)

    I remember feeling so hopeless, grieving over what would never become, feeling crushed. In fact, I nearly walked out on my family because the mountain seemed too big for me to climb. Of course, there are many more details than I can describe here, but I was at my lowest.

    Only recently has God revealed to me that our journey wasn't about my little boy and his "condition". It was about me and the shape of my heart. Like you said, maybe I had a weak heart and my little boy was there to whip it into shape! I also struggled for so long, questioning why God would allow us to walk through this storm if I wasn't able to give Him the glory in some way. I couldn't see how I was able to give God the glory by telling others that a simple change in diet had helped my little boy. But then I began to realize that the glory came from my changed heart (and I still have a loooong way to go!).

    Not only has God used our circumstance to change my heart, but He has also ignited a passion within me. I don't know what the future holds for our family, but I know God has opened doors for me to help other families walk this road, help them in the journey to recover, and share how He changed my heart. I also know that there is a tiny flame in my heart for children with special needs...that don't have a home. :) Maybe adoption is in our future?

    Anyway, I just want to thank you. You have beautifully put my feelings to words. Every part of what you wrote to sweet Nichole applies to my sweet Benjamin. I'm just not eloquent enough to write it! You truly are an inspiration to me and I have loved seeing how God is working in your family.

    Much love,



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