You’re happily tucking your toddler in for her afternoon nap when she starts to panic. Where’s her favorite blankie and stuffed penguin?
A peaceful nap won’t occur without it! With toddlers, there’s a morning, lunch, and bedtime ritual, and you will not deviate from it. This means you have to become the kind of boss you’ve always hated: the one who keeps tabs on every single tiny change. Nothing says micromanager like asking, “Do you have to go potty?” every half hour.
But, what if all this is combined with a cystinosis diagnosis and a treatment schedule that requires several different medications to be administered on a very strict timetable—day and night?
That’s a whole other level of micro-management. But it’s absolutely necessary to stabilize the health of a little one living with cystinosis.
As a parent, it seems as if you were just counting her fingers and toes or googling every possible remedy for her colic.
Now, you have a certifiable person on your hands, and the person is very small, but she already has strong opinions. On everything.
Pointing, wanting, refusing, demanding turns into asking, yelling, singing, splashing. There is the inevitable throwing herself onto the ground in howling frustration, which can often be a daily occurrence.
You will bargain, you might bribe, you might hide behind the refrigerator door and eat chocolate where no one can see you. You will find yourself doing things you swore you’d never do when you became a parent. You will wonder why all of the advice is for the parents of newborns when right now is when you most need that detailed instruction manual.
All of this a very true reality—living with cystinosis or not—a toddler is just a toddler—just some require more specialized care than others. It’s a precious and delicate time. Enjoy!