You’re child is never going to grow up.
He will be completely dependent on you for everything until the day you die or until you can’t care for him any more-which ever comes first. You’ll be taking him to the bathroom and cleaning up after him and bathing him long after he’s a fully grown man. And he’s never going to play football, or baseball or anything. He’s never going to graduate from high school or college. He’s never going to get married or have a family of his own and he’ll probably never have any friends. Not the way you and I do. You’ll never be able to leave him alone. He’ll be a danger to himself and eventually others and you’ll live in constant fear that he’ll wander off or run away and that will be the end of him. You’ll never take that family trip to Europe. You’ll never be an empty nest-er. He’ll never have a career of his own. Or make a truly meaningful contribution to anything. He’ll be a draw on society every living moment of his life until it ends. And the last thought you will have as you pass peacefully from this world into the next is that you hope he will be alright. And that he will understand where you are and that you’re not coming back. And that he won’t be too scared without you. And then your struggle will be over. But his will continue.
That’s it. That’s the bottom. That’s the place every one of us with special kids visits in our darkest moments. It’s a terrible place. Full of despair and hopelessness. And if we stay there, it will destroy us. But it’s a place everyone of us has to find. At first we run from it. We mistake unfounded optimism for hope and deny it. But it’s there. The bottom is always there. In the moments after your worst parenting fears are realized, a diagnosis, an injury or any one of the number of ways this news comes to us, it shows itself to us. And if we look away too quickly, or we deny ourselves the opportunity to find it, we deny ourselves the truth of the journey.
The bottom is powerful and purifying. Things like ego, entitlement, superficial cares or worries can’t survive it. Only you and your child and your faith matter there. Yes, your faith. You can’t live at the bottom without it. You need to feel like you are a part of something bigger than your pain. And when you do, and you do that thing that nearly all faiths tell you that you must, be grateful and loving no matter what, then you start to live. And when you can kneel down, as low as you can go and feel the soil in your hands and be grateful that it’s there for you to stand on, then it starts.
The truth is that it probably won’t end up the way you think it might in your deepest darkest fears. But it might. And there will be countless times on your journey where it’s going to feel like it will. Because the bottom is always there. Every inch of hard fought earth we’ve climbed to get off of it stands upon it. When we fall, and you will fall, that’s where we land. So get used to it. And get comfortable with it. And even dance with it. It’s not going anywhere. Once you understand that, it’s you whose free to leave. Because bottom, by definition, is a relative term. And the race to it isn’t an admission of failure, or a weak whimpered surrender to fate. It’s looking at the the life you so feared square on, right into the teeth of it and winking. Not because it’s easy. Not because it isn’t every bit as horrible as you once feared. But because you’re old friends. And your faith has made you strong enough and wise enough to know that there aren’t any bottoms. Just beginnings. And you’re not afraid any more.