As a Pediatric Nurse, I have spent my career working with kids with chronic illnesses, some life threatening, some not, but all of them impactful on the tiny little spirit. I’ve always tried to be cognizant of what being chronically ill does to not only the body, but to the spirit.
I guess I forgot about it for my child.
I’ve never had a child who needs to understand what it means to be chronically ill. I’ve had babies who have had medical procedures and I’ve had toddlers and preschoolers who have had to grasp the concept of being different. I’ve never had to have a child understand that they are different because they’re ill. I should say, I haven’t had that until now.
No amount of my teaching awareness, talking to them about it, educating them can take the pain away. I can do that, for some extent, for the other kids. Yes, it is hard to look different than your mom and dad. It’s hard to be a different height than the average person. I will always acknowledge that. I will always acknowledge the loss that they experienced, the one that led them here in the first place.
For Dolly, there is another loss to acknowledge. She is losing her a large portion of her childhood to the uncertainty, the worry that she didn’t understand before, but that has begun to dawn on her.
There isn’t much I can do. I’ve wracked my brain for ways to fix it for her. I can’t. There is only one thing I can do.
I can make every single second count. So that’s what we’re committing to do for her. We’re starting with this holiday season, her favorite season of the year. We’re going to spend it together, making every moment count.
–FullPlateMom, who is beginning to understand exactly what is important.