Extra! For persons with Down Syndrome and those who love them, care for them, and journey life with them, it is all about the extra.
When reflecting on the purpose of Down Syndrome in this world, of course, the obvious of an extra 21st chromosome is present, as in the case of Trisomy 21. For persons with Translocation Down Syndrome, an extra 21st chromosome is attached to another chromosome (Translocation, 2017). With Mosaic Down Syndrome, some of the person’s cells have an extra 21st chromosome and some of the cells do not (Mosaic, 2017). Then, there are the extra concerns, worries, doubts, and questions that coincide with these confirmed diagnoses. These don’t seem to be a positive purpose – but, wait!
In fact, a far greater purpose exists for people with Down Syndrome of any variety. That purpose is poised in something that diagnoses cannot begin to define. And, that purpose is the presence of Faith.
You see, over twenty-eight years ago, there was extra of so much of the concerns, doubts, and questions. Not only was my son diagnosed with Trisomy 21, he was also diagnosed with an ASD/VSD (atrial septal defect and ventricular septal defect) or, what was otherwise described as two holes in his heart. All of these medical terms and teams of doctors became a woven cord into our lives right along with the extra chromosome. To this day the books to answer my concerns, doubts, and questions remain shelved and accessible even now.
Yet, all of my worries required something else extra entirely. And, for all that was to transpire, in the first month, it was five months into the journey that my son went into cardiac arrest prior to the previously agreed upon time frame to repair his heart. The doctors simply wanted to wait until he was a year old, stronger, better able to withstand the invasive open heart surgery. However, there was no time to wait when he died and I resuscitated him.
So, on October 10, 1989, as the anesthesiologist was explaining what was going to happen while they operated on my baby, Faith stepped in. Keep in mind, at that point in my life, Faith , as I understand it today, was far from openly acknowledged let alone fully recognized. Fortunately, God know what He was doing and knew I needed to stand in Faith. I could not fix my son’s heart. I did not want to “fix” his Down Syndrome. I only wanted to know that what the physician was saying, that my son would likely not make it off of the operating table alive that day and, even if he did, likely would not live to see the age of twelve, was not true and, in what I know now to be Faith, I believed my son would live.
Even then, I know my son knew he would live as he squeezed my hand with his little fingers and looked into my eyes with a wisdom that no infant could possess on their own. Yet, for all that I believed, I did not know with certainty that all would turn out as well. I did not realize then that I could not lean on my own understanding (Proverbs 3:5). But, I had to submit to what needed to happen (Proverbs 3:6); I had to trust my sons’ well-being and healing to persons I did not know and to someone who was not sharing very good news. I also had to submit him to God’s Care – the only Care that mattered, even though I did not fully appreciate then.
The long story short tonight, as we approach the twenty-eighth anniversary of that fatefully Faithful day is this: my son not only survived his open heart surgery, he is well beyond his twelfth year. Through the years and today, I watch him and he teaches me and others so much about Faith, Godly Faith. In fact, Amos Yong points out what I have learned about Faith and disabilities in his book Theology and Down Syndrome: Reimagining Disability in Late Modernity (2007). Yong quotes Tanya Titchkoskhy and Stanley Hauerwas citing that “disability, as a teacher . . ., is only possible is we suspend even momentarily, the need to fix disabled persons” . . . and, in this suspension of our compulsions, “Christians [can] learn that people with mental handicaps are not among us because we need someone to be the subject of charity, but because without these brothers and sisters in Christ . . . we cannot know what it means to rightly worship God” (p. 293).
The pure and selfless abandonment of pretense given by my son and others with Down Syndrome truly offers that extra we all need as it pertains to the perspectives of worries and woes. These individuals offer an unadulterated display of Faith that shines incredible insights into the purest of worship, praise, and devotion to God, that one cannot help but recognize such Faith, even when they do not know that is what they are recognizing at the time!
Faith! It is what gets us through the most grievous and trying of times – even when we do not understand the why or purpose of it all – that is, in part, the purpose of Down Syndrome – Extra! Faith!
Mosaic Down Syndrome. 2017. Standford Children’s Health. Accessed October 9, 2017 from http://www.stanfordchildrens.org/en/topic/default?id=mosaic-down-syndrome-90-P02133.
Translocation Down Syndrome. 2017. Children’s Hospital of Philadelphia. Accessed October 9, 2017 from http://www.chop.edu/conditions-diseases/translocation-down-syndrome.
Young, A. 2007. Theology and Down Syndrome: Reimagining Disability in Late Modernity. Waco, TX: Baylor University Press. Print.