Am I high functioning today? Maybe high achieving? After this long holiday weekend of family bonding, watching the US Open, running 22 miles, spending two wonderful hours with my faith community, and moving a few work projects along, I have no idea!
When people meet our daughter, a few, after a minute or two say, “Oh, she’s high functioning!” Gulp. Make that Double Gulp. I know they mean well, but how would parents with children not born with an extra chromosome or other “condition” feel if they heard, “Wow, how high functioning your child is!” Or (real-life occurrence for our family), “She’s so sweet. She does well for her handicap! She must always be happy.” For the record, Ellen is not always happy!
Through determination and luck, Ben and I have met three leading Trisomy 21 specialists in the United States who have gotten to know Ellen. Their expertise and generosity of spirit will be appreciated until my last breath. They have confirmed what Ben and I have felt on a gut level about Ellen: hey, if we can assemble the right team, do our jobs as parents, and Ellen has enough desire, she could do well in life. We know Ellen has been fortunate: her physical health has been very sound, and that has allowed us to focus on other areas to help her along in life.
Will Ellen some day receive a bona fide college degree? Although I’m a Quaker and I don’t gamble, I would say yes. Will she hold a job and lead an independent life? I sure hope so. I’ve had that privilege with the many highs and lows that come with it.
Have I been high functioning in my independent life? Some days for sure, but others no. I’m grateful for the successes reached on my own and with others. Thinking about Ellen’s achievements fills me with the same excitement I feel before a Wimbledon final!