Our son, Conor, is four years old. Here’s how I’ve talked to him about Mo’s disability and disease:
Me: Conor, I need to talk to you about Daddy. Did you know that Daddy’s sick?
Conor: Daddy doesn’t look sick.
Me: Well, that’s true. But Daddy has a disease that you don’t see. It makes his muscles really tired and achy. Y’know how your body hurts when you get sick? Your muscles get all sore and you need lots of naps… well that’s how Daddy feels, and it’s important for him to get a lot of rest.
(Conor’s listening really closely so it’s going well)
Me: Daddy’s going to be at home a lot more soon, and it’s up to us to take care of things while he gets better. Even though Daddy’s going to be around it doesn’t mean that he’s going to be able to play with you all the time. He can’t be going up and down the stairs all the time – he’ll still be able to play Legos with you (our basement is Lego Central for the guys) but just not as much.
Conor: Well, he can sit down on the chair and do Legos.
Me: Yep. He can. But if he needs to sleep you need to let him, and we’ll be really quiet, right?
Me: And Daddy’s going to be using a new kind of medicine. The medicine will help him get better really fast, well, we hope it will. But Daddy has to give himself a shot for the medicine.
Conor: Ooooh! Shots hurt! Remember when I got those three shots? (he got those last August at his pediatrician appointment) Those hurt a lot – ouch, ouch, ouch!!!
Me: I know – shots hurt. But shots are important – they help keep you from getting sick. And when you get older you don’t mind getting shots as much because you know they will make you healthy. They still hurt, but it’s okay. It’s worth it.
(At this point I think I should explain how the immune system works so Conor gets the big picture)
Me: Remember when you learned about germs in preschool? Germs make you sick. But we all have an immune system that fights germs and keeps us healthy. Germs are like the bad guys, and your immune system makes white blood cells that are like the good guys. When you are little, like you, your immune system is new and your good guy cells don’t know what the bad guy cells look like. So you get shots that have little bad guy germs in them. When your good guy cells fight those germs they get really big and strong. And you need really big and strong good guy cells to fight big and strong bad guy germs that you might catch somewhere. If you didn’t get shots for your immune system to get bigger and stronger, you could get really really sick.
(Conor’s understanding the “good guy/bad guy” idea so I switch it over to myositis)
Me: Okay – so Daddy’s disease makes his immune system work differently from you and me. His good guy cells get really confused. His immune system thinks healthy parts of his body are bad guy germs. His good guys fight his healthy muscles. They don’t know that they are hurting Daddy – they think they are doing a really good job. So Daddy’s shots will help his good guy cells learn what is a good cell and what is a germ again. So that’s why he needs the shots, got it?
Conor: Got it. And maybe when the good guys know there’s no bad guys, Daddy will feel better!
And with that, Conor now understands why his Dad needs to take it easy at home (yep, we’ve got a smart boy).
I’m sure we’ll have to reinforce this lesson, and that sometimes Conor will want Mo to do more than he can, but at least we have a starting point for future conversations.
And since Conor loves All Things Lego – checkout the scene Mo created for him this morning… delivery of his first doses of Acthar! It cracks me up that there’s both Storm Troopers and the Rebel Alliance (BTW, the Lego Minifigure-sized vial of Acthar contains 5 doses of the drug)