Having a chronic illness and having small children together is an extremely hard combination. Children do not understand why you need to sleep so much. They do not understand that the noises they make give you sensory overload. They do not understand why their mommy is always ill.
Explaining chronic illness to a 5-year old
My 5-year old daughter asked me the other day: “Mommy, why don’t you get better? You are ill, then you are better for a little while and then you are ill again!”
Well, what do you say to that? I choose to be honest and tell her that I don’t know why I am ill all the time. That it is normal to get ill and after a couple of days get better again. But in my case I am always ill. I always need a lot of sleep. I will never fully get better.
That was hard for me to say out oud, but my daughter took it very well. How else can she take it? She does not know any better than seeing me sleep during the day, ever since she was born.
Running the Mommy marathon
Having a chronic illness and being a parent at the same time is like running a marathon non stop. Your body tells you that you need rest, but your child tells you (cries or screams at you) that it needs tending to. “Mommy, I am thirsty”, “ Mommy, I am hungry”, “Mommy, I need to pee”, “Mommy, I want to play with you”
Being a normal healthy parent is exhausting and difficult enough. Now image hurting, having trouble sleeping, getting sensory overload from every little thing, not being able to wake up properly and a whole bunch of other stuff at the same time.
Spoonie parenting rollercoaster
How do I do it? I don’t know!
Some days are very hard and don’t seem to end. Some days are lovely and I enjoy immensely. Like the chronic illness itself there are good days and bad days. Parenting as a spoonie is the same. On some days my daughter takes all my spoons and just makes me want to cry. On other days she fills my spoon supply by being so lovely and helping me out. It is a spoonie parenting rollercoaster. I would not change it for anything in the world!
How do you experience being a spoonie parent? Leave a comment and let us know!