GROW Community

The Perpetual Pursuit of Quality of Life

Alethea Mshar
Special needs mom and Blogger
09/18/19  8:00 AM PST

After three years with no hospitalizations and only a few outpatient procedures, which is a personal best, my youngest son, Ben, is now staring down the barrel of another surgery which will require at least one or two nights in the hospital.

All in the name of “quality of life”.

We have a love/hate relationship with that phrase. While we’re passionate about ensuring that his day to day life is vibrant and as hassle-free as possible, it always comes at a cost, and often that cost is another surgery.

Because of Ben’s intellectual disability (he has Down syndrome and autism), he doesn’t comprehend the risks and benefits of medical procedures. That means that my husband and I are charged with making these choices on his behalf. We interpret his needs and determine that what started as a concern has become a problem that needs intervention; then we start brainstorming and scheduling. Though we have gone through this process dozens of times in the past 13 years, we never quite grow accustomed to it.

When people think of quality of life decisions, the first thing that comes to mind is caring for the elderly.

I know that before our parenting path took this turn we never really considered that children ever required these interventions, much less the decision-making process and planning that goes into them. 

Though we’ve enjoyed a pleasant hiatus, and though the process is familiar, we never get used to coping with this parenting task, much less helping our child without the verbal skills to process his experiences cope with all he has to endure. There is nothing in life that prepared us to play this role. In addition to being stressful in and of itself, it also isolates us, because only those who have walked this path understand the weight we are carrying.

I think what gets to us more than anything else, is that we only know for sure if we have made the right choice after the chips all fall and settle into place.

We make our choices with excellent advice from doctors we trust and in agreement with each other. We often inquire of our support groups about the experience of others in order to hedge our bets. But only after recovery is complete, any unplanned events have played out, and we reap the benefits in day to day life will we know for sure that we did indeed do the right thing.

Until then we will do the best we can with the choices in front of us. Always striving for the best quality of life possible.

inclusion on the playground

Alethea Mshar is a Special Needs Mom and Blogger.

Read her blog, Ben’s Writing, Running Mom

Follow her on Facebook


Post Comment