As a mom of a son with a disability, I walk a path hedged in by fears on both sides. And the older I get the bigger the hedges grow.
What happens if my son outlives me?
On one side is the fear of what will happen to my son after I die. My son is dependent on me for the majority of his needs. He’s independent in some skills like getting dressed and going to the bathroom but for everything else he needs assistance. That makes me wonder what will happen to him if he outlives us.
He’s my son and I’ve been taking care of him his whole life. This is my normal and I’m used to it. How will someone else take care of him? Anyone taking care of him after my death doesn’t know what it’s like. They’ve had short glimpses of my normal but never years. And I worry that taking care of him will be too much of a burden for them. How much will it change their lives? Worse yet, what if they regret their decision to be his guardians?
But it’s not just the people who will take care of my son I think about, I also worry about my son. How will my death (and his father’s) affect him? He’s a creature of habit and a stickler for routine. This will be a huge adjustment for him. How will he handle it?
What if my son dies early
On the other side is my fear of my son dying early. Given my first fear, one would assume this would be a blessing. It isn’t. I can’t imagine my life without my son. I remember when he was seven weeks old he got very sick and we had to rush him to the hospital. We were told, based on his CT scans, that we’d be lucky if he lived to see his first birthday.
I was devastated! The thought of going back to our apartment without my son was unfathomable. Just the thought made my life feel so empty. How could it ever be a home without him? That’s how much of an impact my son made on my life and he was only seven weeks old at the time. I’ve had him for over two decades now and the thought of losing him is much more painful. I still can’t imagine my life without him. It’s hard to think about without tearing up.
Walking the path
That’s the tightrope I walk: The fear of my son outliving us and the fear of him dying early. It’s a paradox. I have absolutely no idea what the future holds, only God knows. And I trust God. But that doesn’t mean I deny these fears either. I acknowledge them. These are legitimate concerns any parent who has an adult with an intellectual disability has. But they don’t control my life, I just walk the path between them.