A letter to my typical children…

Dear Zoe and Eli…

I saw your faces in my mind when the doctor said the life changing words, “Your baby does have Down syndrome.”

My brain spiraled out in so many directions as the tears fell that day. What would her life be like? Would she live with us forever? Would she need open heart surgery? Why was this happening?

And I thought of you.

This was not the sibling I had pictured giving you. You had already been through so much, losing Willow alongside us. Now this. How would this new baby change your lives? Would you still be able to bond with her? Would you grow up having a relationship with her? Would you be ‘stuck’ with her living with you someday? Would you resent us? Would you resent her?

If only I could have seen then what I see now.

I see the way you both fight over who gets to wake her up, hold her, or feed her.

I see the way you get just as excited as your dad and I every time she learns something new. The way you clap and cheer for her makes my heart smile. You see how hard she works and you are learning that hard work pays off!

I see the way you are eager to learn sign language and teach her new signs so that you can communicate with her.

I see you hold her fingers to help her walk with you. You never rush her. You let her go at her own pace. You are learning patience and that not everybody learns things at the same speed.

I see the way you talk about her to others with pride. You beam when you tell people that your sister has Down syndrome. You are learning the worth of people with disabilities.

I don’t worry anymore.

Instead I marvel at the beautiful relationship developing between the three of you. I see all the ways that having a sister with Down syndrome is making you better. I see all of the ways that you are helping her grow and thrive.

When I think about my initial reaction, I see just how wrong my perception of disability was. That I would automatically assume Ivy would have a negative impact on your life instead of the exact opposite makes me feel sad and honestly ashamed. Unfortunately this is the world I grew up in. It is the world most people grow up in. A world where disability is a bad word, and people with disabilities are to be pitied. I’m so glad that you are growing up in a different world because of your sister. I’m grateful that you will learn at a much earlier age than me that the inclusion of people with disabilities in our lives makes us all better. I’m thankful that you will be advocates for Ivy and people like her when you go out into the world.

I love you both so much and I’m proud of you. I can’t wait to watch you and your sister grow together!

Love, Mom

One Comment Add yours

  1. It’s sad how common it is for parents not to understand Down syndrome. Nobody tells them. They worry it will be a burden to the siblings, but in reality, it often means that the siblings get a best friend for life. That’s certainly the case with Katie and me!

    Like

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