“Mom, can I have a play date?” The first thing my daughter says to me when she walks in the door from school.
What I really want to say is: Hell no, it’s hard enough dealing with my own kids but dealing with someone else’s is its own special brand of hell.
What I actually say: You had a play date yesterday and I’m tired so let’s give it a rest today.
What my daughter says: But Mom, I really need a play date. Why are you always tired?
What I want to say: Because you suck me dry of every bit of energy I have. Remember last night when you were too picky to eat the dinner I made and spent an hour whining about it? Remember when you forgot your lunch and I had to bring it to you at school this morning? Remember when you realized an hour after bedtime that you forgot to finish your project? That’s where my energy went.
What I actually say: “_______________________” Then I go hide in my room and eat chocolate while crying about what a terrible parent I am.
This is chronic illness parenting in a nutshell. It’s basically regular parenting only with ten times the guilt and exhaustion. It also means that all the chronic illness advice thrown at you by doctors, internet trolls, bloggers, and friends is totally useless. Pacing, yeah right. Try responding to your child breaking an entire gallon of milk on your kitchen floor by saying “I can’t spend an hour cleaning that up right now, I’m pacing.” No, you have to exhaust yourself by cleaning up that milk unless you want your house to smell rotten for the next three months. And while you’re killing yourself cleaning the floor your kids are whining that they’re hungry, bored, thirsty, their sibling is touching them, their sibling is looking at them, and they’re still hungry. It’s just swell.
I’ve had many moments where I’ve wondering how the hell I got myself into this mess. I mean, this wasn’t my plan for my life. I was healthy when I had kids. I knew parenting would be tough, but I had no idea that my body was going to quit working a month after I had my second child. People tell me they don’t know how I do it, and my response is that I don’t know how I do it either. I just do it because no one gave me a choice. I don’t always do it gracefully, sometimes I lose my temper when a kid spills an entire gallon of milk, sometimes I’m too tired for play dates, and sometimes my kids play too much electronics. But healthy parents do all these things as well, it just comes with the territory.
But how do you deal with the guilt?
I spend more time laying down than the average parent and that has caused me a lot of guilt. However, the other day I noticed that when my daughter got home from a friend’s house she came straight to my bedroom to talk to me. Yes, it was the end of the day and I was laying down because I was tired, but my daughter knew where to find me and she knew that she could come talk to me. At the end of the day, does it really matter that I was lying down? It didn’t really seem to matter to her so there was no need for me to feel guilty. She knows she has a parent that she can talk to, and who loves and cares for her and that is what matters.
Still the feelings of inadequacy don’t magically go away, and it’s hard to be logical about something as important as the quality of your parenting. Parenting is hard and there are days when I feel stronger and more positive than others. At the end of the day my kids know that I love them and that I want to spend my time with them, healthy or not.