Where do I even start with this one? My mind is reeling right now. My body craves rest, but my mind won't shut up long enough to let it. Something tells me you probably know what that feels like. Owen, I don't know how old you'll be when you read this letter. But I hope when that day comes, you read it and look at how far you've come. I hope the things I write about are just a vague memory in your head. I hope you're not ashamed that I put this out there in this tiny corner of the internet. I hope that you understand why I need to write it. For you. For me. And maybe for somebody else who is looking for hope or a kindred spirit or just searching for someone who has traveled the road we've traveled. And Owen, I wish we didn't have to travel this road. I'm not going to lie, Owen, this road is a bitch. And I know that's not a nice word but it just is.
Owen, one week ago you sat in a room full of specialists and went through hours of testing and evaluations. And you were a freaking rockstar, Owen. Seriously. We were so proud of how you handled all of it. At the end of it, Owen, they told us you have something called autism. Autism, Owen. And your daddy and I are so sad about that. We're not sad because we're ashamed. Quite the opposite, Owen. We are so damn proud of you. We're sad because now we have to add autism to an already long list of things you struggle with. We think it's too much for your little body, Owen. It's just too much. Then while still trying to process that, yesterday Owen, we found out that you're still not growing and your doctors would like you to have a surgical procedure to place a feeding tube in your stomach, Owen. Did I mention that this is too much? I don't even know what to say other than that, Owen.
It's just too much.
I wish life were a relay race, Owen. I wish you could sprint down the final 100 meters and pass me the baton. I would carry that damn baton for the rest of my life and let you rest on the sidelines, Owen. I am so so tired of watching you struggle. Oh man. I'm so tired of it.
But Owen, my sweet Owen, as hard as all of this is, as much as I want to scream and cry and throw things at the injustice of it all, I know you're going to prove us wrong yet again. I know this isn't going to be too much for your little body to handle because you have a big God that has never failed to carry you through the hard times. He carries me as well.
Owen, I opened my bible this morning and, through the tears, I found 2 Corinthians. I love 2 Corinthians. Do you know what it says Owen? It says that "We are hard pressed on every side but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the the life of Jesus may also be revealed in our body." Oh man Owen. I see Jesus in your body. I see Jesus in your spirit. Your laughter and smile light up my world. Literally. I don't know why you have to struggle, but I know you will be a light through your struggles. You already are sweet boy.
Owen it also says "For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." Oh man, sweetie. I really can't wait to see you run through those gates complete and whole, physically and neurologically. I can't wait for your body to feel no pain. Can you imagine Owen? NO pain. No screaming because your stomach hurts or your clothes feel weird or the world is too loud and crazy for you. One day we are going to have such a party to celebrate you, Owen!
And Owen, about this autism thing? We're gonna figure it out together. I don't know a whole lot about it yet, but I do know that we have a great IEP team and we're gonna rock it. Kiddo, I'm going to learn everything I can learn to help you fight the best fight you can fight. We're bringing our A game. And Owen, autism is just a label. In spite of what others may think, it does not define who you are. It doesn't capture you. People may not understand it all, but you do nothing less than amaze me over and over and over and over and over and over and over again. And I see you, Owen, not a label. I really do. I just want you to always know that. We've got your back! This whole family, extended and all, we've so got your back!
So I guess what I want to say, Owen, is hang in there. Let's hang in there together. Let's take the tough days one at a time and try our hardest to rely on our God to get us through them. Owen, I'm going to try so hard to focus on your smile and your laughter and your funny little personality. Because you are a joy. You really are. Owen, I'm going to try really hard to focus on the miracle of modern medicine and what those extra proteins and fats and calories are going to mean for your little body. What it's going to mean for your growth and development. I'm going to try not to be scared about surgery and taking care of tube feeding and the logistics of it all. I'm going to try to focus on the positives, Owen.
And when we are sad, Owen, because it's inevitable to be sad sometimes, I'm going to try to remember that God holds your body and your spirit in His hand. I'm going to nuggle you and cry with you and try to remember that, ultimately, this is all "light and temporary."
Owen, this world is full of so many different people. And our lives can change in an instant. And you've changed my life for the better, Owen. Always for the better. Never forget that, Owen. Never ever.
I love you!
Your mom, your fighter, your friend.