Wes Michael is founder and president of Rare Patient Voice. He joins host Stephen V. Smith to discuss how Rare Patient Voice connects patients and caregivers with the opportunity to voice their opinions through surveys and interviews to improve medical products and services.

Hello, I'm Stephen Smith and today we're going to talk about being present. Our one and only grandson turned two years old recently. He had a small party and he was blessed with many gifts from his family, mostly toy tractors, dump trucks, cars, and things like that. And while the things we bought for him were special, it was, it was really the week leading up to his birthday that we will always remember. Highlights of his birthday week included rides with Mawmaw and Pawpaw, meals at his favorite restaurants, a visit to the fabulous Tennessee Aquarium. Seeing prize chickens and live music at the county fair, and a hiking trip at our local state park. By Saturday night, we were exhausted, but full of love and gratitude for this little boy and all the light and love that he's brought into our lives.

You know, I've read that around age two is about the youngest point at which humans form lasting memories. Now, whether he grows up retaining this birthday week or not, we don't know. But one thing we do know for sure this boy knows that he's surrounded by family members who love him. That weekend, his parents said that he would be playing and then just randomly start saying, "Mawmaw and Pawpaw" to himself. And you know, that tells me all I need to know: That we were on his mind and in his little heart.

The years I spent running our small business, a marketing agency, enforced in me a loop-closing mentality. Success consists of projects that are done right. Made up of steps that need to be checked off in order to accomplish what's necessary to achieve your goals. I have to consciously work at setting that mentality aside when it comes to the business of life. You see, that part of my brain would have said, "Buy some toys? Check. Attend a party? Check. Sing the happy birthday song? Check. Success." If I had allowed that mentality to rule, I would have missed so many blessings that weekend. You'd think that a few years of wrestling with a rare disease would have taught me to slow down, to focus on the truly important things in life, and to take time to enjoy the small gifts that come our way each day. Well it's been nine years since I was diagnosed with myasthenia gravis, and I still struggle with losing myself in the whirlwind of activity.

In Oliver Burkeman's book "Four Thousand Weeks: Time Management for Mortals," the author brings to light the fact that if we live to be 80, we have just over 4,000 weeks on Earth. When you look at it like that, you know the truth is really staggering. Our grandson has lived just 100 of those, while Mawmaw and Pawpaw have logged 70% of this total. By the time he's our age, we'll most likely be long gone, and all he will have will be "photographs and memories," to quote Jim Croce. If we ever have a question about how we should invest our resources in our grandson's life, that should answer our question.

I don't know anyone who would say they've lived a life of no regrets. But as I strive to live a truly rare life in the years I have left, my focus needs to be on filling those days with the things that will matter most in the end, both to me and to the people whom I'm blessed to have in my life. Sometimes people are confused by what I mean when I talk about living a rare life. Is that just about learning to live with a rare disease? That's certainly part of it. But the bigger picture is crafting an existence wherein you step outside of the normal and the routine, and you create a world that enriches you and those around you. What does a rare life look like for you? Well, for me, it's pouring myself into my grandson's life to help him become the person God would have him to be.

It's investing in my wife and always being mindful that she's not a supporting cast member in the story of my life, but the leading lady in every scene. It's being a friend and a leader to my children, setting a good example of how a husband and a father conducts himself. It's about taking time for extended family and friends. It's about filling our lives with the arts, being creative, enjoying the outdoors and all that God set into motion when He began his work and declared that it was good.

I fail at many of those on pretty much a daily basis. But weeks like the one that we had with our grandson, it's a reminder that being intentional will reap huge returns. Our grandson may not remember a lot of details, if any, from his birthday week, but I believe the time that we spent with him will add to the foundation that we're building in his life. He may not recall with much clarity the big fish at the aquarium, or the prize roosters at the fair, or the trail through the woods. But he'll know that Mawmaw and Pawpaw love him, and that spending time with him is one of our greatest joys.