I want to share my heart with you. I’ve been meaning to do so since I started this project a few weeks ago. My emotions are heavy though and I’m afraid I won’t be able to convey the truth and depth of them very well. Well in my weakness He is strong, right? (2 Cor 12:7-9)
So I’ll try to tell some stories about what Everett and Austin have meant to me and what they have taught me about being a better father…and about LIFE in general. As in, what is important in life.
I can feel my emotions bubbling up even as I have finally started this post. I intend to share stories in videos eventually so that you can get more of the feeling behind the words that I am typing. That’ll be hard because once it’s out there in internet-land it is out there, and I’m not quite ready. I just have to keep in mind that I am a human being doing his best. And my best will be good enough. It is what it is.
I’d say that the biggest thing that I learned from my boys is Carpe Diem, Seize the Day, Make the Most Out of Each Moment. Don’t Take Anything for Granted. We found out that they would have a short life expectancy in 1997 when they were 3 and 1. This terrifying news had a natural, organic way of producing a Living in the Moment lifestyle. So for that I can be grateful.
I was inwardly compelled to be a better dad and to be patient as a dad because I didn’t know how much time I’d eventually have with them. I wanted to ‘redeem the time’ and make the most out of what few moments I would have with them.
What made this even more pressing was that I ended up in a divorce with their mother in 2002 and I ended up having even less time with them then I had hoped! So I made the best of it. Many times I beat myself up for not being a very good dad. But I did my best.
One instance of being a good dad was about 10 years ago in like 2008. I asked Everett, the oldest, if he ever wishes he could ski. He said, “NO! That would HURT!”
I paused. I didn’t try to explain what I meant and I never did. I thought about what he was actually saying. He was saying that he was FINE the way he was and he didn’t want to change! Can you imagine? He could hardly move about and do things for himself, but when I asked him about something different than what he was, he instantly said NO!
As I thought about it then, and continue to reflect on it, Everett had an amazing acceptance and contentment about who he was and his limitations. What a gift! We can all learn something from that. Contentment is so important.
I had a similar experience with Austin about 7 years ago in 2011. I knew that both he and Everett had long grew disinterested in baseball. I love baseball and particularly the Yankees. I follow each game and stat religiously.
So I’d tease Everett and Austin about how the Yankees had won the previous night or whatever, pretending that they might care. I’d often get a chuckle from them or a sigh, humoring me a little bit.
One time, we were in their mom’s kitchen and both boys were crowded in it in their wheelchairs. And I don’t think I’ll ever forget the way Austin joked with me about it. He was pulling my leg (both boys had a great sense of humor), but here’s what he said…
“You know Dad, I don’t get it why people want to run around in a circle over and over again just to get back to the same spot!”
He said it in his typical tongue-in-cheek, wry sense of humor. We all had a good belly laugh about that one. Hah! Can you imagine the simplicity? Really put the game of baseball into perspective for me. haha
You know, that even though I don’t have any more children of my own anymore for the time being, through this experience I have gained a lot of fatherly love to share for kids in general, and for kids with Duchenne Muscular Dystrophy (DMD) in particular.
My heart goes out to Paul Kayonga and his kids and I want to help them. I can totally empathize with Paul from a father’s perspective. And not only that, but I want to help the kids! And also help other kids affected by DMD in the poorer parts of the world, too.
I’m sure there are fathers and mothers and children affected by DMD in other remote villages in Uganda…and in other parts of Africa, in remote parts of India, and many other remote parts of other countries who stand in need of blessing from The Everett and Austin Project.
As God provides and as God is our witness, we will do so.
Official Mission of The Everett and Austin Project
The goal of the Everett and Austin Project, Inc. is to improve the health-related quality of life for children with Duchenne Muscular Dystrophy and other rare diseases, and increase educational opportunities for individuals and families in developing countries. Duchenne Muscular Dystrophy is a genetic disease that causes progressive muscle weakness, leading to disability, impaired function, and decreased ability to participate in daily activities.
Children in developing countries are often underserved, neglected, and/or abandoned by their parents. Some families live in remote areas with little to no access to medical and healthcare resources. Additionally, impoverished individuals and families struggle to meet their daily basic needs due to lack of much needed resources.
The Everett and Austin Project seeks to educate, empower, and equip individuals with products, services, and skills to improve overall quality of life and sustainable living in developing countries.