"I was diagnosed with my chronic illness nearly three years ago, just shortly after losing my firstborn son. I was still grieving my loss and then hit with more devastating news. I remember being diagnosed like it was yesterday—stage 3 Polycystic Kidney Disease, a chronic genetic illness that has no cure.
There were so many thoughts running through my mind. I had no idea what this meant for me or my life. I hadn’t even made it to my 30th birthday yet and I was thinking about all the possible effects this disease would have on my life. My biggest concern, though, was my family. I had two young children at home who depended on me to be there for them day in and day out. For months before I was diagnosed, I had symptoms that affected my daily routine but I only had one kid to take care of then. When you throw a baby into the mix, things get a lot more interesting.
As parents, we always tend to put our kids first. That’s pretty much our job, right? When I was diagnosed with a chronic illness three years ago, that all changed for me.
As parents, we always tend to put our kids first. That’s pretty much our job, right? When I was diagnosed with a chronic illness three years ago, that all changed for me.
My responsibilities as a mom changed. You see, I was still responsible for taking care of my kids, of course, but putting them first wasn’t an option for me anymore. With a chronic illness wearing down my body on a daily basis, I had to learn to put myself first. Why? Because if I didn’t then I would have absolutely nothing to give my kids. I needed to make sure that I was doing well in order for my kids to thrive. While my perspective of parenting changed after I was diagnosed, my family’s bond became stronger than ever before.
I thought that my Polycystic Kidney Disease would take over so much that I wouldn’t be able to do things for myself anymore, but I was wrong. Some days are harder than others. Some days I just don’t have the strength or willingness to do anything at all but my kids help get me through every day with their laughter and cheerful spirits. My kids are my biggest cheerleaders and every ounce of energy I get is from them.
I had to learn to put myself first. Why? Because if I didn’t then I would have absolutely nothing to give my kids.
If you’re wondering what parenting with a chronic illness is really like, here’s the raw truth. When I was initially diagnosed, I thought that parenting with a chronic illness would be an insurmountable task. I had so many preconceived notions about what it would be like and all of the things I wouldn’t be able to do without even fully experiencing it.
I was wrong. Is it hard? Yes. It’s definitely a challenge on a daily basis and honestly, on some days I just want to throw in the towel. Couple parenting with the body aches, lack of sleep from insomnia, side effects from medications, and just the general stress of knowing I have a chronic illness, and it can seem like an impossible task.
Even though parents with a chronic illness have so many things stacked against us, we can tackle this parenting thing. Three years in and I’m proof that it’s possible to be an amazing parent (words from my daughter) while battling your illness.
If you’re a parent with a chronic illness, here’s what I’ve found to work for my family so far.
Always have help on speed dial
Never be afraid to ask for help from your friends and family. My children are homeschooled and having a support system that we can call to help navigate my kids through lessons if I’m having a bad day makes a world of difference. If my daughter needs help with her math, she can “phone a friend” for help while I’m taking a 10-minute breather.
Be flexible
Things change constantly when you have a chronic illness. Managing doctor’s appointments, play dates, and afterschool activities tend to get a little hectic. Be flexible with your schedule and open to making changes if needed.
Tell people what you need
Being vocal about what you’re experiencing and what people can do to help is probably the most important thing you can do. What I’ve learned is that no one can help me through this journey if I don’t ask. Communicating my needs with my husband and children helps us to work together better as a family.
Be honest with your kids
My son is too young right now to understand what is going on and what my condition is but my daughter fully understands. Early on after I was diagnosed we sat her down and explained to her what my condition was and how it makes me feel. We answered her questions to the best of our knowledge. We were able to find a few children’s books that explained my condition and could illustrate what I was experiencing. As you go through your journey, share bits and pieces with your kids.
If you’re not feeling well, tell them. I’ve learned that my daughter really likes being in the loop and on the days when I’m not feeling well she takes it easy on me. Your kids are going through this too and watching you push through your illness on a daily basis. Explaining what’s going on to them can help ease any worry or anxiety they might be having.
Give your kids special tasks
After I explained to my daughter my diagnosis, she was more eager to help around the house. I gave her special tasks daily like putting away dishes. This might seem like a simple chore, but every day when my daughter does it she knows that she’s really helped mommy out. It’s one less thing that I have to do and it makes her proud that she can help me. Find one small special task or two that your kids can do around the house to “help mommy out” and reward them for it. Make sure you tell them how much you appreciate their help. This will win you major parenting points.
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