A Glimpse of Parenting With a Chronic Illness

Parenting is hard. In fact, I’d go ahead and say it’s one of the toughest jobs out there. You don’t get much of a break, if ever. It’s a 24/7 job, unless you work outside the home, and then you get to leave for a few hours to do another job, and then have to come back and continue being Mom or Dad, or sometimes both. Your kids are your bosses, you can’t reason with them most of the time, they dictate everything you do, and you don’t get paid. The lives of these tiny people are completely in your hands, and not only do they drive you absolutely up the walls, you have never loved someone to this extent and to this degree in your life. A love so strong it can hurt.

Let’s not forget that everyone out there, including those without children, are self-proclaimed parenting experts. Doesn’t matter what you do, you’re being judged on your parenting. Co-sleeping, breast feeding, screen time, crying it out — whatever it may be, it’s controversial and someone has an opinion about it.

Having a chronic illness is also a full-time job. You’re constantly exhausted, in pain, your schedule is dictated by your bathroom breaks/medication schedule/sleep patterns (or lack thereof)/appointments. It is a harsh reality for a few of us. And to top it all off, 99 percent of the people around you don’t get how truly hard it is to be chronically ill.

Now let’s mash these two things together — being a parent and chronically ill — and see if you can imagine what it’s like.

I’m currently a stay-at-home mom to my beautiful, intelligent, mischievous 3-year-old daughter. She’s stubborn as they come (yes, she gets that from me) and she tests my patience every day. I didn’t choose to be a stay-at-home mom, not that I don’t love being at home with her, but the turn of my health back in 2015 is what dictated that I can no longer work outside of the house. I am to be at home, all day, with my daughter and my ailments.

Let’s see if I can give you a glimpse into what it’s like to be a chronically ill, stay-at-home mom:

I have almost no energy. Standing for more than 10 minutes at a time takes a lot out of me. When I go out with my daughter to any sort of activity, I have to make sure I have nothing else planned for the day. It takes absolutely everything out of me. I don’t have energy for all these play groups. Most of them are during her quiet time, which I desperately need, so I end up not going to them. I need to be sure that any activity I take her to, there’s seating for me, as I can’t stand for long. Any sort of exertion and I’m done for the day. These are things I have to plan for and think about, whereas it might not even cross the mind of any healthy parent.

I’m not the most patient person to begin with. I’m a lot more patient than I used to be. I think part of that is I’m married to the most patient man in the world, and with having health issues and having to deal with doctors’ offices and insurance companies, you kind of have to learn to be more patient. The thing is though, it’s really hard to remain easy-going when you’re in pain and so beyond exhausted, and you have this little person who brings all the challenges of raising a child. I hate that I get so unbelievable cranky during challenging moments (like when she refuses to listen and obey). I beat myself up constantly because of that. I don’t want my daughter to think of me as a curmudgeon, although really, that is what I feel I’ve become.

The other thing I have really struggled with is the judgement that people have on parenting types. I realize the articles people post on Facebook aren’t directed at me, but how can I not take it personally? The big school of thought going around right now is that screen time is equal to doing heroin. My daughter gets two two hour quiet times during the day and she gets access to one of our old phones. We monitor what she watches and plays, and there are only age appropriate apps on the phone, of course. Here’s the thing though, if she doesn’t get those two quiet times, it’s me that’s affected. And it’s not just an, “I need my alone time” reason. No, this time is absolutely necessary so that I don’t make myself sicker than I already am. I need to lay down during those times. Many parents will clean and prepare supper while their kids nap or have quiet time; I lay down and rest, otherwise I crash, and when I crash, I crash hard. So you’re telling me that because of my illness, my kid isn’t learning as much as she should and this habit is equal to a drug addiction? How do I not take offense to that?

I have been extremely blessed to have people around me who have helped take care of my daughter. My mother-in-law comes once a week so I can go to appointments and lunch dates (which I have found is equally as important to my health as anything) without having to bring my daughter along. I have friends who know my health limitations and will help chase after my daughter if need be. But not everyone is as fortunate as me. And it’s hard to ask people for help, especially when they don’t realize how hard it is on you. I don’t look sick. Unless you’re in my extremely close circle of family and friends, you don’t know how truly sick I am because I won’t let you see it (I look  nasty on my bad days!)

Here’s what I really want to get across. If you have a chronic illness and you’re a parent, you’re not alone. Both of these things are really hard on their own, and put together, it’s by far the hardest thing out there. You can argue me on that, but unless you’re living with both, don’t even bother. And if you’re not living with both or either of these, please educate yourself. Help those around you who need it. Even just a text saying, “I’m here for you.” A visit with a coffee! An offer to babysit so they can go to appointments. A hug when you see them. Both of these lifestyles can be very isolating. Just imagine what it’s like to have both at the same time. The biggest thing you can do is be there for that person.

With all this being said, I would never, ever change my status as a mom. In fact, we want to grow our family, because to me, it really is worth it. It’s hard, but man when that kid looks up at you with all the love in their eyes, you realize that all the pain and exhaustion is 100 percent worth it. I would gladly throw away the chronically ill portion of it all, but that won’t be happening, so if I have to be a mom paired up with being this sick, I’ll do it. And I’ll do it to the best of my abilities. But again, know that you are not alone!

Let me say it one more time: You are not alone!

Follow this journey at A Gut Feeling.

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