“We love people with Down syndrome but, you know, it’s not something you wish for.”
Many a time, people have served up these dismal words, force feeding me the answer of 'no' in casual conversation. As with sour milk, I gag at the taste of this indirect accusation. I spit it out discreetly and force my lips to sit idle, voice muted, mouth plastered with a polite smile. Here, I offer my forthright response: With respect, please, save your wishes for dandelions, shooting stars, and tossing pennies, because I don't need them, and nor do my children.
What I do know, is that the core of this comment is negative. These words fuse a people to the false stigma that their genetics cause them to rank subpar, low-grade, and undesirable. In a roundabout manner, this allegation insinuates that anyone, if given the option, would prefer the standard 46 chromosomes to the life of someone with 47. It reflects the idea that to have Down syndrome is to be inferior, live less, hurt more, and lack in body, mind and opportunity. The only validity connecting a 'disability' to an arduous life, is birthed from the demand to function in a world geared towards the typical. Ours is a society built on a narrow foundation of man-selected standards, based on our own natural strengths and abilities, therefore ostracizing those outside the mold. Mainly, this statement is not fact, but opinion, and no opinion of mine.
Would I have wished for my children to have Down syndrome? When first given the possible diagnosis in pregnancy, I began to attempt envisioning our ‘could-be’ future. I quickly pictured two pairs of blonde pigtails bouncing on the heads of giggly little girls, chasing each other down the church corridor, complete with button noses, squeals of delight and almond shaped baby blue eyes. Since then, with their birth and the confirmation of Trisomy21, I have gained more knowledge sifting through books, meeting with specialists, and forming new friendships. To this day, I have yet to find a reason to impel me from desiring the way in which my children were perfectly woven together.
Knowing my stance, it seems odd that I often struggle to associate my girls's physical characteristics as those of Down syndrome. My eyes have mapped out and memorized each feature and trait belonging to Annette and Charlotte, identifying them as unique and perfect and mine. Occasionally, I am reminded with a lazy flaunting of those cute pink tongues, or with a sweet little scrunchy face, of their connection to a culture that which I had never before the privilege of identifying with. As they develope, the results of their genetic differences will become increasingly prominent, and I am excited for that too! In my eyes, this is but a solidification of our spot in the cool club. So no- past, present, future, whatever, I would not wish away a single one of the intentionally constructed cells composing who they are. I can truthfully say, yes, I would 100x over, wish for the blessing of having DS as part of their marvelous selves. They are in whole, more than I knew to hope for.
Back to the assertion at hand. To clarify, Down syndrome puts no limits on what I wish for my lovely ladies either. If we view those with different abilities as living out a burdensome and unpropitious life-sentence, we rob ourselves the capacity to fully recognize their beauty and worth. As with my sons, I ultimately wish for my daughters to be confident, joyful, and loving adults. I want them to experience inclusion, relationships, and Jesus. I am well aware of the hurdles in store, yet must remember; hardship eludes no one. Judgments, stereotypes, or being taken advantage of, are common worries I battle. While these are probable and valid concerns, all humans are susceptible to pain, exclusion and heartbreak. Likewise, all humans experience growth and victory in overcoming failures and struggles. I free the notion that success will lead to contentment-for anyone. Happiness will never be measured in comfort or void of trials.
It is high-time to change our rhetoric. Children will be imprisoned with a nasty self-image if we allow this thinking to continue unaddressed. I want so badly to strip away the negativity associated with the lives of these individuals from conception to adulthood. Please know, any thought process that leads you away from desiring the occurrence of Down syndrome, is faulty. This shining, exuberant, life-exploding community is not something to be wished away. I love that my daughters have Down syndrome, and it’s critical that they be allowed to love all of who they are as well. Our goal here is not to train them up in conformity, but towards a full understanding of how wide, long, deep, and high they are loved.
Nettie and Lottie, 100% yes, I wish for you. In past, present, and future. I love each and every one of the cells making you the masterpieces you are. You, my loves, are a work of art I have yet to fully take in, because the magnificence shoots so far out into our futures. How God formed you, in your DNA and soul, is all that is required to each lead a life lived abundantly. Our world has yet to comprehend the depth of your beauty, so I will use every dandelion, penny and shooting star, on the wish that it will someday soon.