A Life Worth Living
Brady and Mary Alice meeting our new little cousin, Teddy, for the first time
The physician walked into the new mother’s hospital room and dropped a stack of brochures onto the patient’s bed. They were resources for various institutional care facilities for people born with disabilities. This new mom’s baby had Down syndrome (DS) and the doctor’s advice was to put her baby in an institution. Over the years I heard from several families who were sadly given the same advice as this mom. Thank the Lord (and thank you Dr. Baker) that this was not my experience after learning, a few hours after delivering my third child (on Christmas Eve), that he most likely had DS. It was a complete shock for all of us but at least my doctors were supportive.
A few years after my son was born, I was asked to speak at a Rotary club meeting on the topic of special needs. I will never forget a comment made from a well meaning woman in the audience. I appreciated her honesty in her comment. She was intrigued and very surprised to learn that someone like my son could live a happy and fulfilled life. It baffled her. Her remarks left me thinking.
What is a life worth living?
October is National Down syndrome Awareness month. In Down syndrome, there is an extra copy of chromosome 21 (also called trisomy 21). This extra chromosome changes the way the body and brain develop, especially limiting the individual’s intellectual capacity. Down syndrome is the most common chromosome disorder in the United States.
Date night by the fire
I thought it would be fun to share with you what a day in the life of a person with DS looks like when he or she is given the opportunity to live a full life like “normal” folks (whatever that means). Brady has lived at home with me since birth and has established himself quite a routine (a common characteristic among folks with DS). I wish I could ask the OB doctor who recommended institutions over family what kind of life he believes is worth bringing into the world? I will let you decide if my son’s life seems to be a life fulfilled and worth living.
I “interviewed” my 29 year old son Brady, who has Down syndrome, to better share his routine with you. He came up with his schedule on his own. This is what it looks like for him:
7 a.m. - Brady sets his own Alexa alarm to wake himself with “American Top 40” songs at 7a.m. every single day. He listens to music on his phone App and sings along (loudly) to his favorite songs.
Takes a shower, dresses himself (choosing his own clothes which sometimes mom feels the need to “tweak”.)
8 a.m. - comes downstairs to make himself a turkey bacon, egg and cheese omelette (folded over to perfection every time). He sits at the kitchen table, always blesses his food, and enjoys his meal. He prepares his lunch to take for later.
Sends a bible verse of encouragement to his “Young Life leader friends” using his Jesus Speaks App on his phone (beats me how he knows how to do this).
9 a.m. - Tues and Thursday, he does a program called Independent Life (anindependentlife.org) with other individuals with special needs, working on skills to help him live as independently as possible. And he has fun!
Have you ever tried to move a stack of grocery carts?
10 a.m. - Starts his work day (Mon, Wed, and Fridays) at Food Lion. Mom takes him to work because he will never be able to drive and an Uber costs him over an hour’s earnings. (Transportation is one of the biggest limitations for people with disabilities.) His job as a bagger and grocery cart gatherer seems to be a great fit for his abilities. He enjoys the people and they seem to love him. Though he earns a paycheck, Brady doesn’t have a grasp of how much he makes and what it costs to live. It is doubtful he ever will.
4 p.m. (or slightly later on the days he works) to 5 p.m. - Facetime with his fiance, whom he loves deeply, while sitting in his big chair in his room. (even on the days when he has been with her until 3:30 p.m.)
5 p.m. - he texts me, “What’s for dinner?”
After dinner he watches DVD’s and Netflix shows in his room (Full House, Fuller House, Fresh Prince of Bel-Air being some of his favorites).
Some nights he takes a Zumba class at the gym. Monday’s he goes to a group called David’s Table with his friends. Last night he went to his monthly supper club.
9 -10:10 p.m. - Facetimes his sweetheart again (they never seem to tire of one another).
11 p.m. - Lights out
Why do I write this? I want to stir up some thinking, some conversations as to What IS a life worth living? Next week, I’ll share statistics that should stir you. I need to sit on a soap box for a moment.
I would really like to hear from you. What do you think makes a life worth living? Please, share your thoughts. Feel free to email me at kirbyking0413@gmail.com or leave me a message on Facebook.