Oh, the future. What will it hold for the masses? Flying Cars? Will the Saints ever win another Superbowl? Low carb cookies that don’t skip out on taste like so many others? These are the questions that keep me up at night. Or, I suppose they used to. My worries have changed a lot since the Saints won that first Superbowl.
Ten years ago, I saw marriage in my future. I already had the ring, but had yet to pop the question. I saw us having a dog. I also saw two kids and a house. Everything came along in due time, in its own unique ways.
My worries then were that I could handle all of this that I was about to thrust myself into once I asked my then girlfriend to marry me. Would I be a good husband and Dad? Where will we live? Will there be new and exciting Oreo flavors? Well, we have a great house, but those new Oreo flavors… yeesh.
My worries changed after Charlotte’s diagnosis. I had a lot of fear, anxiety and sadness and I was mourning her entire life and what I wanted it to be. It was crushing, before I realized that none of that was ever up to me in the first place.
If you’ve read my other blog post about what it was like going through all of that, you got a taste of it. The late nights at the hospital can play with your brain, but I’ve had quite a bit of time to process things since then. Suffice to say, 2018 has been trying for our little family but we’re going to break out of it stronger than before.
At first, my thoughts of her future looked bleak. I believe one late night, or early morning at some point I just broke down crying and Arielle asked me what was wrong. I could only say “She’s going to have such a hard life.” I didn’t know any better.
It’s funny though, after plugging into a few Facebook feeds and websites, how quickly you can get a broad view of something. Just a quick flip through a website can show you what certain communities or groups can face on a daily basis. I saw groups of people supporting loved ones and could see the compassion in their hearts for everyone that was new to the fold. It seems like nobody meets a stranger in this community of Down syndrome. One day I came across a statistic that said 99% of all adults with Down syndrome are happy with their lives. Nobody SUFFERS from Down syndrome.
My focus has shifted away from just making sure that she’s “taken care of”. I don’t think that’s something we’ll have to worry about with her. We are responsible parents, we’re working on getting her set up financially for the future. She has a very loving big sister that will be a great caretaker should the need arise and will make good decisions if need be.
Josh ten years ago would want his kids to go on with their lives making sure they did something meaningful and productive, so why should the events of the past year change any of that? Aubrie has bounced around from wanting to be a teacher, to a veterinarian to a gastroenterologist and back again. It’s too early to ask Charlotte that question, all she wants right now is a good nap, a full tummy and some snuggles and playtime with the people she loves. Pretty sure we’ve got that covered for her.
I see great stories of people with Down Syndrome that give me hope for Charlotte in the future. A young lady in Louisiana who graduated from a college program and got a great job at her local police department. Multiple stories of small business owners who exclusively hire individuals who have some sort of disability and of course there’s the great story of John’s Crazy Socks. There are many others.
I’m not just concerned with her making a name for herself professionally in some way, what about her personal life? Josh ten years ago wanted his kids to have a relationship and get married, maybe have 2.5 kids, a labrador and their own suburban dwelling. Aubrie says she’s never getting married, and that she’s going to live with us forever. Of course, she’s only about to turn seven, we’ll see how she feels about that in ten years when she’s in the throes of teenagerdom.
No matter your thoughts on reality television, it was a great window for me to be able to see a few episodes of “Born This Way”. Watching these young adults deal with with the same kind of personal relationships that everyone else I know deals with. Friends that you may not necessarily want to be around, people messing with your relationships, or trying to date and get to know someone new. If it’s through school or church, or through groups like our local Down Syndrome association and their many programs, I’m sure she’ll have many of the same experiences and interactions that I did as a young kid or teenager that will give her memories to last a lifetime.
I have gone from being confused about Charlotte’s future to being hopeful, and I’ve shifted back to her doing something that is both meaningful and productive, but I’ve added another task for her. I want her to be an inspiration and bring hope to others, especially worried parents. This is not a diagnosis to fear, and I hope that Charlotte grows up to be like the people I have had the good fortune to meet that do have Down syndrome. I’ll always be proud of her. Your kid will be amazing, do amazing things and inspire everyone they meet.
The Lewis Pride 