The Dark Side
Too dreamy and idyllic. Within the tides of response to our message of advocacy, often comes critique; today’s shaping an idea that we have over-promoted Trisomy 21. Splashing forth through social media, and day-to-day interactions, we often encounter differing opinions considering the desirability of Down syndrome. I prefer to chalk it up to opinion, because opinions are subject to change. Opinions, more specifically, are built on perception, experience, and expectation. So, for the individuals who are up in arms over my lack of “encapsulating the dark side of Down syndrome”, I here offer you just that. Perhaps a better starting place for this response, is with my own opinion, which remains that Down syndrome is 100% desirable.
If you couldn’t tell by the sweet potato smudge on my shirt, or the LEGOs in my pocket, I am a mom. My perception is that of a parent. Due to this, I may seem at odds to be biased. Let’s be honest, we all have looked back at photographs of our wrinkly newborns and realized they were not quite as ready for a contract with Huggies as we had fully believed in those first moments. Cheerleader falls under one of my gladly accepted duties as a mother, and while I enjoy praising the efforts and growth of my children, I am not blind to their weaknesses, or the strain of parenting in general. Prime example: In my eyes, my precious sons hung the moon, but there is no denying that they are currently also hung up on urinating in public and writing ‘ninja comics’ on their bedroom furniture- in Sharpe. Children, all children are imperfect, often self-centered, prone to disobedience, and needy. Us ‘adults’ default into this category more often than not. It is a dark side etched into our humanity. Yes, I am insanely proud of Nettie and Lottie, but please do not discredit the beauty of Down syndrome as parental rose colored glasses. Perhaps the posture of motherhood, one of sacrifice, servitude, and continual grace, has made it easier to identify the negative stigma of DS as a total sham. Any facade developed in ignorance, powered by fear, and promoted through a lack of care, is due to contrast with perceptions founded through teaching, nurturing, loving, and protecting another. When constructing views and opinions, first take away vanity, convenience, and comparison. Step back and accurately identify all children as worthy of the best, unwavering, cheering, semi-biased, mommaesque love we are all capable of offering.
BUT don’t let me forget the health complications! (This is me being funny, because everyone seems to follow up a positive declaration about a person with DS, with the statistical potential they have for health issues.) Yes, I fully acknowledge that there are associations between Down syndrome and various birth defects and health hurdles. Yes, medical anything concerning your child SUCKS. Surgeries, procedures, complications; no parent wants any word of it ever. Also, please note, I speak from the experience of a two month stay in the NICU, three heart surgeries, and another two monther in the PICU. I extend unlimited amounts of grace to anyone going through such times. There is no room for judgment at the bedside of a hospitalized child. Yet, having been there, through the fear and sadness entailed, I still firmly disagree with those whom are under the impression that T21 is a burden or hardship upon our family. The potential medical complications associated to DS do not strain or distort my ability to love the unique way in which my daughters and many other individuals are made. Further, it would not repel me from ‘wanting them’, extra special DNA included, if I were given a choice. Again, this is personal opinion, but let me ask you: Is your goal for your child perfect health? Sadly, you won’t find it, no matter how well you sift embryos, or how organically your family eats. The truth is, no person is immune to disease, sickness, injury, or incident. This goal cries good intentions, this goal would spare you heartache, but this goal is unattainable in life as we know it. This is why the longer I live, the more excited I am for heaven. While standing/sitting/sleeping next to Lottie’s hospital bed, never were my thoughts, ‘If only she were normal’. My thoughts were,’ Lord, please hold us.’ I experienced waves of thankfulness for every second I have had with Lottie, and each second more I am blessed to have. Her hardship through CHD was real, and devastating to witness. I wish heart defects were not a part of the world; however, my hardship wasn’t Lottie requiring medical interventions, it was my own weaknesses to fear and a desire to be in control. Down syndrome isn’t hard, life is hard. This world is broken and most of us will leave it with scars. People weren’t designed to live forever. This is the dark side of our world. All the while, beauty flows through every circumstance, taking all shapes, hues and rhythms. There is grace for the hurting, for the process of grieving, and healing. Grief doesn’t trump gratitude, and it’s ok if they camp out together. My point is, it is not about your child’s health complications, but the potential of grief stripping away either of your’s joy through them. This does not have to be a cause and effect scenario. My child was born without the center of her heart, and we nearly lost her through the reconstruction of it, but through the grieving of her pain, my gratitude for our time with her (however long) grew, and I am still here, joyfully declaring her birth, life and future as worthy.
If this world was ran by people with DS, believe it or not, it would still keep spinning. The human race could continue on. Don’t believe me? The population would simply have different ideals and expectations. To accommodate people of all abilities, we need to define our own expectations. Do we mandate a person to seek happiness and self-worth through their IQ levels, physical abilities, or potential to run for presidency? Do we cap and reward our term as parents with a 18 yr stint producing independent children? When our expectations are built solely on societal views, odds are that our breaking-the-mold children won’t meet them. If I were to enter a culture built around individuals with DS, I would long to be invited in and appreciated for who I am, loved and accepted, just as my daughters will long to be. Our statements of admiration over them are not meant as one-sided blindfolds for the public eye, but reflective of our desire to simply celebrate others and their differences. We are not painting a faulty picture of a bitter reality, not tricking the world with mere optimism. We are stating, unapologetically, that people with Down syndrome are beautiful, desirable, capable, worthy, and should be valued; and I expect my daughters to know that about themselves.
As I am sure by now we all can attest, I have no intentions to be silent to any side of Down syndrome. Darkness we have encountered, but only in the sinfulness of humanity, our broken world, and the narrow-minded exclusivity of our society. Criticisms, doubts, and judgments can come all day, and we will stand on our belief that having Down syndrome makes you no more or less desirable (or inconvenient) as any other individual. I don’t deny the presence of hardship, but if we are going to talk frankly, it is found in and around persons of all abilities, child and parent. We dreamily and idyllically hope for a time when it doesn’t seem odd to celebrate someone with an extra chromosome in their DNA. Our aim is to rightly put into perspective the fact that people, regardless of fitting in the generic mold of the majority, are simply, unquestionably, and marvelously people; and as humans, we all hold value-we all hold the potential to be a light.