What My Autoimmune Disease Has Taught My Children

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autoimmune diseaseWhen I dreamed of being a mom, living with autoimmune disease never appeared in that vision. When I thought about all the lessons I would teach my children, managing a chronic illness never made the list.

Now I can’t help but worry about how my autoimmune disease will emotionally affect my daughters.

Since women are twice as likely as men to suffer from autoimmune disease, there are a lot of mamas juggling managing their health with parenthood. Do the rest of you worry that you’re scarring your children?     

When I have a flare, which happened recently, I find myself slipping into mourning all that I am not. For all that I can’t be for my daughters and husband. For all the experiences we won’t have together because of my limitations. I loathe being in that place. So I don’t linger there. I shed a few tears, put on my big girl panties, and move on.

After all, negativity and stress have been shown to exacerbate autoimmune conditions. 

Besides, being a perfect parent is an unattainable myth.

Even without autoimmune disease. 

So rather than dwelling on what we can’t do/be for our families, we should focus on what we can  do. Because I can’t work full time, I have been able to volunteer in my girls’ schools, at church, and in multiple facets in the community.

A cherished mentor once told me that when you’re feeling sorry for yourself, do something good for someone else.

I get to fill my cup by serving others. And my schedule is flexible. I can be present for my family when they need me. I can drive car pool and attend my girls’ events. 

Still, sometimes I fear that growing up with a “sick” mom will negatively impact my daughters. Or that they will resent me for those days when I can’t get out of bed.

They are compassionate and helpful now, but will they always be?

These thoughts nag me at times, so I did some research on the long-term effects a parent’s autoimmune disease has on children. I found this list and plugged in our own experiences. 

  1. They have acquired patience. When my girls were little, we always packed activities to keep them busy while waiting in a doctor’s office. Now they bring a book with them wherever we go. Some days I simply don’t move quickly. They’ve learned to be patient with me and even ask if there’s something they can do to help. In a time when electronics make everything instant, having patience is a rare quality.
  2. They have developed flexibility. On more than a few occasions we have had to change our plans or cut activities short because of my fatigue or pain. While it was frustrating for them when they were little, our girls have learned to go with the flow. They know that we can reschedule plans and that I make up the time with them when I can.  
  3. They have learned to be self-sufficient. My older daughter is a planner and doesn’t like to be late, so she does whatever she needs to make sure we leave the house on time. My younger daughter likes to be helpful and is very independent, so she helped with household tasks early on. Both girls learned to pack their own school lunches when they were five and seven. Not only is it helpful on mornings I’m moving slowly, they also are more inclined to eat what they pack themselves. Additionally, we taught them how to do household chores when they were young, so even if it’s not on their chore list, they pick up the slack at times when I can’t do the tasks myself. Their future roommates and husbands will appreciate these qualities one day. 
  4. They have learned to be considerate. More than just helping me, our daughters notice when others need help. They’re the first to open doors for elderly. When we’re at family functions, they clear people’s plates and ask if they need their drinks refilled. Their relationships will only be stronger because of their consideration for others.
  5. They have witnessed commitment. Our daughters see how their dad cares for me when I have a flare. Whether it’s bringing me water, breakfast in bed, ice for swollen joints, or issuing extra hugs, they see their father fulfill his wedding vows. When choosing their future husbands, they’ll know what commitment and love look like. 
  6. They have developed compassion. They see when I’m in pain or not feeling well and they step in to help. During a rheumatoid flare I had to use crutches for a few weeks. The rubber on them made my arms break out in a rash. My 11-year-old took a pair of her own fluffy socks, cut them and sewed them to go over the rubber pads. My 13-year-old checks with me to see if I need anything before going to bed at night. This compassion goes beyond caring for me. My daughters gravitate towards special needs kids and befriend them at every opportunity. They notice people who look lonely or sad and will talk to them or silently pray for them. 
  7. They have learned to not judge by appearances or jump to conclusions. Autoimmune disease is often an invisible disease, meaning you can’t always tell by looking at a person when they’re in pain or feeling fatigued. Understanding this, if they encounter someone who looks mean or isn’t nice, they realize the person might just be having a bad day or battling something they don’t know about. 
  8. They have developed an appreciation for service. Our girls recognize the intrinsic rewards of helping others. They jump at opportunities to volunteer or lend a helping hand. 
  9. They have learned that abilities do not define a person. My daughters know that I have autoimmune disease, it does not have me. They understand that on good days I can shoot hoops or bump a volleyball with them and that on bad days we can read a book or play cards together in bed. Our relationships are strong and transcend challenging times. They know that we’ll be there for one another no matter what. Additionally, they don’t judge others with disabilities. They can see past the wheelchair or neurological challenges to the character and heart of the person. 
  10. They have learned that it’s okay to experience pain and express emotion. My girls have seen me at my best and at my worst. They recognize when I’m trying to put on a strong face and check to see how I’m doing. We’ve had deep conversations that I never thought I’d have with them at a young age. They’ve learned that it’s okay to admit when they can’t do something, and that it’s okay to feel all the emotions, even when they don’t understand them. With any luck, they’ll be kinder to themselves than I was when I was young. 

So perhaps it’s okay that I’m not the mom I thought I’d be. Perhaps I’m exactly the mom my daughters need.

Whatever battle you’re facing, you’re building stronger, more resilient children because of it. Stay strong. Keep fighting. And give yourself grace. 

 

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Erin is a Colorado native who loves both the mountains and the plains. She was an elementary school teacher until she did something she said she’d never do: marry an Army guy. Not only did she fall in love with him, she fell in love with the military life, and continues to write about it. Now she’s a stay-at-home mom to two amazing girls, though she’s rarely found at home. Erin is active in her community and church, is a former PTO President, and currently serves as Vice President of the Colorado Springs chapter of American Christian Fiction Writers. She believes in second chances, and is thankful for hers. She was thrilled to remain in Colorado Springs upon her husband’s retirement from the Army, and counts herself lucky to watch the sun set behind Cheyenne Mountain every evening. Erin enjoys reading, gardening, hiking, and any time spent with her family.

5 COMMENTS

  1. Erin, I wish my 20 somethings had developed all the qualities your girls have. I made life too easy for them, and they didn’t learn some of those things, though they are good young people, generally. They still have lessons to learn that your girls have already learned. I think far from hurting your girls, your limitations are helping them develop into the women God would have them to be. Remember that God works all things to our good and his glory. Sounds like that’s exactly what he’s doing in your girls.

  2. Erin, this post made me tear up. So beautifully written, and your words and suggestions came from a deep well of wisdom. Thanks for sharing your perspective and your suggestions.

    • Thank you! We all have our challenges that make parenting difficult at times. With a lot of prayer and luck, our children will overcome them. 🙂

  3. This article is spot on, so many times I am scared/concerned that I am not enough.. but then I look at my daughter and see these qualities in her. She has faced the world at it’s worst…head on with me and wasn’t scared! I am always so proud of her and sometimes am grateful that I have the chance to slow down because i can’t keep up… thanks for putting this down in words! I needed to hear that tonight!! Sending love for better days ahead for you and yours!!

    • Amy,
      Thank you for your kind and encouraging words! It helps to know that we’re not alone in our struggles! Out of all challenges come light. It sounds like you’ve prepared your daughter for both. May God bless and guide you in your health!
      Erin

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