Discovering Your Child Has A Chronic Illness
Two of my close friends live with chronic conditions that send them to the hospital for days or weeks at a time, every few months. It is obviously very hard on them, and makes leading an ordinary life quite difficult. They’ve had to find work at companies that will understand when they go MIA due to a symptom flare-up. One of them has his own company and so, though he doesn’t have to answer to a boss when his illness makes him unable to work, he has had to find someone to take care of his clients during those times. My heart goes out to people living with a chronic illness: these conditions are usually invisible to everyone else, and nobody quite understands why the affected individual struggles to do simple tasks so much. But, there is this other group of people we don’t talk about so much when we talk about chronic illness—the parents of the affected individuals. Here is what it’s like getting the news that your child has a chronic illness.
You blame your body
At first, you blame your body. It must be your genes—your DNA or your parent’s bloodline. You curse your body. You must have caused this problem. And you feel very guilty because if it is your body, then the condition skipped you, and plagued your child. You’d rather it picked you, and skipped your child.
You blame your partner’s body
You can turn to blaming your partner. Was there nothing in his family medical history about this? Did he even take the time to study it? Did he smoke too much when he was younger? Eat the wrong things? You’re both just in pain. It’s normal to lash out.
You blame your tiniest mistakes
You drive yourself crazy going over every little decision you made about your child’s life, from the start of your pregnancy with that child until now. Was it the snacks he had? The paint you used in the nursery? The exercises you did while pregnant?
You never want to travel
Going on a trip, especially one that requires an airplane ticket, becomes incredibly stressful. You never want to be far from your child. If he goes to the hospital, you want to be there the minute he arrives in his hospital bed.
You want them to live nearby
It absolutely devastates you if your child makes the decision to move far away. You understand that he can’t be in your town forever but, he’s just signed you up for so much more worry.
You need the best insurance
You become an expert on insurance. You need the best one. You don’t get to live in a world of thinking, “This or that probably won’t happen.” You need to be ready for anything and so too does your insurance.
Insurance premiums skyrocket
Naturally, the child’s insurance premiums skyrocket. You may need to help him pay for these for life, or at least for much longer than most parents pay for their child’s insurance.
Every phone call makes you nervous
Every time you see your child call you—or his significant other—your heart rate speeds up. A little part of you always wonders if they are calling to tell you that your child is in the hospital again.
You scrutinize their romantic partners
You judge your child’s romantic partners not just as partners but also nurses. They need to be your child’s caretaker. If they get married, this will be the person that looks after your child’s health when you’re gone.
You scrutinize their habits
You want to know every little detail of your child’s life from the type of sunscreen he uses to the water he drinks. You are a very nosy parent and you accept that.
You hover, and they pull away
You hover a lot. You have an urgent need to always know that your baby is okay, and that he is making healthy decisions. He, of course, pulls away because you’re smothering him.
So you stop hovering, and you panic
The last thing you wanted was for your child to pull away, so you back off so he’ll come back to you. He takes longer than you’d anticipated and you have a panic attack because you don’t know what’s going on with your child’s health.
You feel like a failure at times
You are biologically designed to feel like your biggest responsibility in life—your purpose—is to keep your child not only alive but also healthy. Everything in your DNA tells you to feel like a failure, because your child isn’t in perfect health.
At other times, you’re the best parent in the world
There are times when you have a glimmer of a good feeling—the feeling that you love your child more than any other parent loves theirs because you do so much more for your child. Every day feels like a mini battle, and you get up and willingly fight it. That is some strong love.
It makes you closer, but you’d do anything to extinguish it
You’re closer to your child than parents with healthy kids are. You have to be in contact more. They call you for help more. You recognize that, but you don’t relish in it: you’d get rid of this condition for your child in a heartbeat if you could.