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To All the Parents With a Chronic Illness: You Don't Need to Feel Guilty

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Hey, all you parents out there with chronic illness… are you listening?

Are you ready? Because I’m talking to you.

You… are enough. Just like you are.

I know you feel inadequate sometimes. You feel like you let your people down. Like you have to call it quits some days and lay low, and you disappoint everyone. Some days you are in pain and crabby and you yell at everyone. Other days, you are sick or exhausted and you miss the big game. You have to cancel the zoo trip or the playdate you made because, suddenly, you feel too unwell to accomplish it.  Sometimes you just have to tell your kids, “No… I need to rest today.” Hey, I know how the “parent guilt” comes creeping in to take root in your mind.

Don’t let that guilt come in. Don’t open the door to it. Hold on tight. You are enough. Let me tell you about the lessons your children are learning from you:

I have three children who were 12, 10 and barely 5 years old when I was diagnosed with lupus four years ago. I remember how scared I was as I started some pretty aggressive treatments as soon as my positive biopsy came back. I remember how much it rocked my world to suddenly change the way I lived my everyday life. I had no idea what this meant for me and my family. And what I remember the most is sitting in a restaurant with a friend, looking at my just turned 5-year-old, and making the statement, “She will never remember who I was before this.” The thought that she might only know a mother who “couldn’t” do things because of limitations placed by a chronic illness made me so sad.

That was four years ago. And man… I’d love to be able to grab that woman’s hand and say, “It’s going to be OK. You don’t even know the lessons you are going to be teaching your children yet. Just hold on tight.”

I’m telling you now… you are enough.

The last four years have been more than trying. My little family has been faced with some pretty serious challenges at times, and we’ve been more than a little scared at others. My middle daughter worried about me and helped my mother and father take care of my household during a week I spent in the hospital. My son sent me text messages asking if I could make him Swedish meatballs when I got home. He loves my Swedish meatballs and I’m not even Swedish. That’s love. My youngest slept in the room with my husband and me every night for six months after I got released from that hospital stay because she was worried I would get sick and leave again. My kids know I have tons of doctor’s appointments. They have had to sit and wait on me during lab work. They are as familiar with my pharmacist as I am. I held my youngest in my arms while I got my first biopsy. I had my second and third biopsies the day my oldest turned 16. I was worried I would ruin his birthday with “yet another round” of my health stuff. My 9-year-old likes to watch me give myself the weekly injections I take, and all of my kids understand the term, “It’s methotrexate day.” We all make jokes about “Mom’s hangover.” Well, except for the 9-year-old. I’m trying to hold off on that lesson for a little while longer.

I used to worry a lot about the impact all of this would have on my kids. Would they see me as sick? Would they see me as inadequate or unreliable? Would they know, that no matter what, I will take care of them and they are not responsible for taking care of me? At least not until my husband and I retire and pull into their driveway with our RV and a big, “Surprise! We’re here!”

I don’t worry so much anymore. Life lessons are not bad for kids to learn. My kids are proving that to me every day.

My kids don’t need a mom who is perfect all the time. They don’t need their lives to be without struggle or hardship or challenges. They don’t need to be shielded from the reality that is a chronic illness. They just need me. Just like I am.

I am enough.

The more I contemplated the things they might be missing out on, the more I realized that what they are learning through all of this is much more worthwhile.

They are learning that we pull together in the face of adversity. Because that’s what family does. We’ve done that a lot these last four years. They are learning about compassion. My kids see it when I am tired and struggling. Each of them asks me at different times, “What can I do to help Mom?” They are learning about how spouses can care for each other. My husband is the first to jump in to lighten my load on days I need it. His care for me is also a great lesson for our children to take with them in life. And they are learning that parents never stop loving on their children, as they watch my own parents step in to help every time “things get real up in here.”

And hey, I’m not so bad myself. My kids see my effort in doing everything I can to make sure they are safe and loved and have every opportunity I am able provide them. They watch me give my all on good days and do the best I can on my bad days. They’ve got a lesson in learning to take a break to care for your body so you can keep pushing in the long run. They see amazing friendships we have strengthened, and new ones we have formed through this journey. They have watched me accomplish some pretty big tasks through adversity during the last four years. They’ve seen me find the good, even when things are bad. And those are great lessons for them to learn.

I promise… your chronic illness does not make you a chronically inadequate parent.

So, those lies we tell ourselves about being inadequate or worthless because of our chronic illness, are exactly that. They are lies. I think our children would be the first to say, “You are more than enough.”

I wish we could extend that same grace to ourselves.

That’s not to say there will never be feelings of inadequacy again. I’m sure we will still feel guilty when we are unable to be at the big game, or join the play date. And I feel certain that I’m going to get crabby and yell in the kitchen one evening this week. OK… two evenings this week. Three… tops. But if we can just think about the positive things our kids are learning despite the struggle we internally feel, maybe we can focus on the bigger picture that displays the fact that we kind of like the people our kids are turning into. Maybe those lies won’t be quite so loud.

Because all in all, I’d say there’s some chronically awesome parenting going on out there.

And for the record… I totally made the Swedish meatballs.

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Thinkstock photo via GeorgeRudy.

Originally published: October 3, 2017
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