You know how when you have a terrible cold or the flu, and all you want to do is stay in bed? If you’re young or single, you might be able to get away with that, but parents are a no-go. There are kids and responsibilities and stuff. Now imagine feeling sick every single day of your life — while trying to be the parent your child needs.
This is what life is like for chronic, invisible illness patients who also happen to be parents. You love your kids, you would do anything for your kids — even die for them — but you’re saddled with severe limits to what you can and can’t do for or with them.
I have two children, both under the age of ten. I have a brilliant, sweet son, and a beautiful, tenderhearted daughter. They’re funny and crazy and smart and wonderful and I love them unconditionally. But I feel bad for them, because they never know which “Daddy” they’re going to get.
Will today be a day for fun, playful Daddy who rushes into the room to tickle them and hug them and play with them? Or is this a day when of sick Daddy, who can’t concentrate on what they’re saying, can’t move a single muscle without hurting, and seems like he’s in a bad mood because he can barely keep his eyes open? That second guy is seen a lot more often than the first one.
It’s not fair to them. They deserve a dad who can do all of the usual “dad stuff.” They don’t deserve a dad who can’t go outside and play because he has to avoid direct sunlight. They should have a dad who can give them quality time, not one who’s either too tired to move or desperately trying to find work to help pay his endless medical bills (and all of the other bills that are affected by an inability to work consistently).
Right now, “quality time with Daddy” usually equates to sitting next to me on the couch, particularly on the bad days. I talk to them and listen to them and cuddle them (my daughter especially loves cuddling!), and they’ll bring me drawings and Legos and other stuff they’ve made, looking for approval. Of course I always love everything they do and rave over their creations. Sometimes they’ll watch me play video games, or I’ll watch them. On really good days I might play a board game with them.
But that’s about all I can offer. There are many who tell me that the love I give them is enough. That it’s all they need.
That’s not reality, that’s a song lyric. A fairy tale lens clouding up real life.
They need love, yes, absolutely. But they have tangible needs, too. They need a normal dad who can do things with them and for them. Instead they’re stuck with this sick, grumpy guy. And the worst part might be that most of the time, they don’t realize that this isn’t what other kids have. They have no idea what they’re missing out on.
I’m not on my deathbed or anything; I do okay most of the time. But on those bad days when I can’t function, my heart is flooded with regrets because my horrible, invisible, chronic diseases are affecting my kids just as much as they affect me.
And that’s not okay. So I fight. And I’ll keep fighting. I’ll rail against my limitations. I’ll push myself ever-harder. Because I have to hope that one day things are going to get better and easier. And because those two kids deserve it.