I breathed a bit easier on 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 2 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 about her extra chromosome 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… sleepless nights.
And so daddy and I prayed for a healthy baby.
And so you were.
As I write this letter, my sweet neurotypical daughter Allison, there are several things I think you need to know.
1. You were never meant for a life of normalcy.
Because you were not born under normal circumstances, or in a normal atmosphere, life may not be normal.
Your older sister with Down Syndrome 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 unique gift, although others many 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 Beth,” you have caused the room to permeate with love.
I’ve never said the words “Down Syndrome” to you and I doubt you know what they mean. All you appear to know is that Sissy is awesome. Mommy agrees.
2. Mommy is so proud of the way you interact with your sister.
You didn’t know it, but your sneaky mom has watched you and your 14-year-old sister play on your baby monitor. Sister 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 begin to talk.
I’m amazed Allison Eloise, at the way you interact with your sister. You speak to her without expectation of return. You’ve never questioned (yet) why that return has not occurred. You simply accept it as so.
I love when you voluntarily 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 Tayler 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. Full of empathy you are, Mommy could not have dreamed of a more beautiful baby sister.
3. As you grow into a teen, I hope you understand that you will rarely be treated equally.
At 2, you already know and recognize 10 sight words! For your sister however, it has taken quite a while to even verbalize and pronounce those words. Please know that mommy and daddy are not being unfair or mean, we just have different requirements for you both. And though our love for you will always be equal, our requirements will not be.
Because you are a fast learner Allison, Daddy and I will challenge you. We will challenge you, not to hurt you, but similar to your sister’s language barrier, we will challenge you to break the barrier of sexism and racism to become a beautiful, educated, African American female.
We will push your older sister Tayler to do the same, however, this push may look slightly different. Just know that it’s for your good.
4. As you get older, mommy and daddy do have an expectation that you will be patient not only with your sister, but with others like her, or others with disabilities.
And on days where your patience fails, we will show you a video of your last 2-year-old tantrum. We will remind you that to whom much is given, much is required.
5. 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 will stare. I hope you can be brave enough to defend her if mommy and daddy are not around. 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.
Allison, as you grow into an adult, I hope you know that Daddy and I have no expectation that you will care for your sister when we leave this earth. We already have plans set aside for that. I hope you marry and you achieve much more than Mommy and Daddy ever have.
All we ask is that you continue to show your sister love, just as we and your sister have shown love to you.
Keli Gooch is the mom of Tayler Beth (14) & Allison Eloise (2). She is happily married (Lewis), and is a Licensed Professional Counselor/Mental Health Service Provider. Keli writes to end the mental health and disability stigma, and you can read more of her work on her blog “Call the Counselor” at keligooch.com.