Thursday, October 10, 2013

The Blessing and Problem of Down Syndrome

October is Down syndrome awareness month. I have had a great month with Mariana, who continues to attempt to walk, fights about using a spoon, talks only when she wants and has begun a fake laugh. There are many developments in her little life, many that are frustrating for her parents (like hitting and scratching) and many that are hopeful little signs of maturity. Boy do I love being this girl's mama.

Caring for Mariana is one of the best experiences of my life. If it were possible, I would cure her of Down syndrome. Human beings are supposed to have 46 chromosomes in each cell. Having 47 is a problem for the individual. It is not a problem for me. I do not fear failure and, like so many, wish this baby away. I fear failure and therefor proceed doggedly forward to help this child overcome the problems her extra chromosome is causing. I experience the joy of being human every day. We humans are different from other species because--among many other reasons--we can discover treatments for Down syndrome. We can conquer the risks associated with Down syndrome. We can offer those with Down syndrome more opportunities to make the most of what they are capable. Just 50 years ago the life expectancy for people like Mae was 25 years, now it is 60+. No other beautiful creature is capable of this kind of progress. I live that truth every day.

The beauty of having Down syndrome is in the conquering of it's risks. These beautiful people are challenged every day by the simplest of tasks, and they continue to accept the challenge and overwhelmingly enjoy their lives. The beauty of caring for these individuals is in conquering ourselves. We who have the blessing of being caregivers become more patient, more intuitive, better problem solvers, more hopeful, more persistent and more understanding. We love more fully because we appreciate all the gifts life gives us through the lessons we learn in caring for those with Down syndrome.

I often come across family members of a person with Down syndrome who will claim that calling Ds a disease is insulting. We shouldn't label. We should love all people for all people are unique. Well, yes, of course. But no. Having an extra chromosome puts these people at risk for leukemia, thyroid malfunctions, heart defects, intestinal defects, cognitive impairments, motor impairments, Alzheimer's disease.. and the list goes on. While caring for our loved ones improves our lives, and while there are blessing for those with this condition, can we really honestly say we wouldn't remove these specific risks if we had the chance? Every time we go for Mae's CBC a pall of sorrow overwhelms my spirit until we get the results. I do not like to think of my child experiencing cancer even though I know we could tackle it. Knowing we could handle anything doesn't mean I'd sign my kids up for anything. 

If I chose the conversation for the month of October it would be this: How can we highlight the absolute beauty and dignity of each person with Down syndrome without giving in to the temptation of claiming Down syndrome itself ought not be treated as a problem within the individual?

Down syndrome is a problem. People with Down syndrome are a blessing. Discuss.

1 comment:

  1. you continue to amaze me through teaching me. Thanks.