When Lily was still very much a baby, I had my first ‘unpleasant’ encounter with an elderly woman at a store. As Lily and I were scooting along in our cart enjoying a little shopping, we were stopped by a woman. She looked at Lily and mentioned how cute she was (not to brag but this happns all the time so I thought nothing of it). I stopped the cart and allowed the woman to meet Lily. Then she asked the most horrifying question:

“How long do they live?”

Life Expectancy for people with Down syndrome has increased dramatically over the decades. Due to advances in medical technology, their life span has grown from 9yrs. old (in 1910) to 25yrs. old (in 1983) to 60yrs. old today with several living well into their 70’s.

There are more than 400,000 people living with Down syndrome in the United States. More and more people are interacting with individuals with Down syndrome, increasing the need for widespread public education and awareness. No kidding, right? This woman really needed some education and maybe a little tact!

However, she reminded me of just how far we have come as a society. Only 40 years ago, things were so very different. Parents of children with Down syndrome were encouraged to send them off to an institution to live and told to forget about them. You rarely saw anyone with Down syndrome because thay were kept hidden away, like a shameful secret. If you have ever seen a paranormal or haunted show – they usually involve a mental institution, careless staff and extreme mistreatment of the individuals in their care. Let your imagination take you to that visual as thats where most individuals with Down syndrome ended up- forgotten.

Now shaking off that horrendous image, fast forward to today- today most everyone knows someone with special needs. You see people with Down syndrome working various jobs, having social and romantic relationships and living an independent life. I often reflect on this in a moment of prayer and am so grateful that Lily was born in todays world. Of course there is more to do, more awareness to offer but the world is so much better than it used to be.

No parent wants to discuss how long their child has to live. And frankly no one knows the answer! We hope as parents, that our children will outlive us, as that is the natural order of life but we cannot control life and death. We don’t get the final say in this matter.

One of my most favorite quotes states “Life is what happens to you when you’re busy making other plans.” – John Lennon. If you forget to live in the moment, you will miss the moment. Lily lives in the moment and because of her I am learning how. There is a surprising joy to each moment and I don’t want to miss any of it!