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To the Little Sister of Our Daughter With Down Syndrome

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I breathed a bit easier the day you were born.

From my over-stretched, worn-out belly you emerged with a mezzo-soprano scream.

You were my rainbow baby, almost two years after my miscarriage.

When I heard the doctor say, “She’s fine,” I felt at ease.

It wasn’t that I feared Down Syndrome. It was that I felt concerned about all the medical complications that sometimes go along with Down syndrome. Your older sister was born with Down syndrome, and it was a shock to me because I had no idea until she was born.

I’ve loved your sister since her birth, just as I love you, but I’ve hated seeing her deal with medical problems… the surgeries… the sleepless nights.

I hope you realize you were never meant for a life of “normalcy” because you were not born under normal circumstances nor in a normal atmosphere.

Your older sister has helped create our beautiful, fabulously unique, “unnormal” atmosphere. She has filled our home with immeasurable love and joy, and you have made our joy complete.

Your older sister has a gift, although others may not view it as such. She has a gift of love, which often causes her to go against the grain and share it with the world. I do believe, my sweet girl, that you have this gift as well. I’ve watched as you have run up to “Sissy” and hang tightly to her leg. With your simple “I love you, Tayler,” you have caused the room to permeate with love. I haven’t said the words “Down syndrome” to you, and I doubt you know what they mean. All you appear to know is Sissy is awesome. Mommy agrees.

You didn’t know it, but your sneaky mom has watched you and your 14-year-old sister play on your baby monitor. Sissy has had a lot of difficulty talking over the years, and using sign language has never really been an option for us because of her fine motor skills. So I often wondered how you girls would communicate once you began to talk. I’m amazed at the way you interact with your sister. You speak to her without expectation of return. You haven’t questioned why that return has not occurred. You simply accept it as so.

I love when you give her a kiss or have giggle time with her. You’ve always shown so much respect for her, and you have never left your sister behind. At dinner, I’ve watched as you sneak and give your already-full sister food. I’ve observed when you get your sister’s clothes or glasses to help her prepare for school. Mom loves how you are especially concerned when she is feeling ill and has to go to the doctor. You are full of empathy. Mommy could not have dreamed of a more beautiful baby sister.

As you grow into a teen, I hope you understand you may not always be treated equally.

At 2, you already know and recognize 10 site words. Your sister has taken a long time to verbalize and pronounce those words. Please know that Mommy and Daddy are not being unfair or mean when we set different requirements for you both. And though our love for you will always be equal, our requirements may not be. Because you are a fast learner, Daddy and I will challenge you — not to hurt you, but similar to sister’s language barrier, we will push you to break the barrier of sexism and racism — to be a beautiful, educated, African American female. We will challenge your older sister to do the same; however, this challenge may look slightly different.

big and little sister hugging

I want to warn you that you will learn as you grow that there are horribly mean people in the world. They may make fun of your sister. They may stare. I hope you can be brave enough to defend her. And if you find yourself feeling embarrassed or at a loss for words, Mommy won’t be angry. We will talk about it and develop a plan to address it for next time.

As you grow into an adult, I hope you know that Daddy and I have no expectation that you will be the primary caregiver for your sister if she cannot live independently when we leave this earth. We already have plans set aside for that. I hope you both achieve much more than Mommy and Daddy ever have.

Allison Eloise Gooch

All we ask is that you continue to show your sister love, just as we and your sister have shown you.

Originally published: September 16, 2016
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