How do you take on one of the most selfless jobs in the world when taking care of yourself is a necessity?
How do you balance taking care of the needs of your family when your body’s needs cannot be ignored?
How do you Mom with a chronic illness?
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And, my answer for this, is I have no effen idea.
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I have been a Mom with a Chronic Illness for close to ten years come this September and in some ways it feels like it’s gotten even harder to figure out.
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Instead of finding my stride, my pace, my routine, it’s somehow become more difficult.
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Yes, you can take into account that in the last three years, I’ve become a Mom of two. And throw in a recent pandemic and life suddenly became 10x more complicated. And before the pandemic, I was working and we had a full schedule as a family.
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But, somehow, being a Mom and having a chronic illness feels like it’s gotten harder through the years.
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Or, maybe, it feels that way as compared to the first 22 years that I have had Lupus.
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Those 22 years of Lupus where I was not a Mother.
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And I could focus on my health. My needs. My limitations. I could rest when I needed. I could lie down when I needed. I could stop when I needed. I could come home after a long work day and just rest. I could cook when my body felt up to it. I had no schedule that I had to keep with other than my own. I could entirely focus on what my body needed. There was nothing that put me between a rock and a hard place.
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Even during my pregnancy, I could focus on just my health.
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If anything, being pregnant with a chronic illness suddenly made it even more important to be vigilant about my health. I was considered high risk. I had regular doctors visits from all my specialists. At one point I thought it was normal for a pregnant woman to be seen by her doctor that often. Turns out that is not the norm.
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Once my first was born the focus on me stopped.
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It became about him.
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And I didn’t mind. I was all about him. Everything and anything HE needed was my focus. My body was a means to keep him happy and healthy.
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I was wrapped up in his needs, which meant my needs fell to the side.
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And, for a while, surprisingly longer than what I would’ve bet on, my body was ok being pushed to the limits.
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I was not sleeping enough. I was not eating to manage the Lupus. I was not taking care of my stress.
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But then, my body did hit a wall. And my Lupus flared up. And I had to be put on medication again.
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I was heartbroken on so many different levels. But mainly I was so disappointed. Disappointed in myself.
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And not for the reason that you might think.
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I was disappointed because I felt like my body had failed me. I was disappointed that it couldn’t keep up. That it couldn’t keep up with Motherhood.
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I was disappointed that I couldn’t just set aside my body’s needs for my child. I was disappointed that my body was forcing me to, what felt like, choose between my needs and my son’s.
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I hated that I couldn’t ignore that I was sick. I had hit that rock and the hard place. I was being forced into two different directions.
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And I realized that it wasn’t just something temporary. It was something I now had to figure out and have a game plan for. For the rest of my Motherhood life.
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It’s been nine and a half years since I became a Mother. And it hasn’t gotten easier balancing being a Mom and having a chronic illness.
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The heartbreaking part for me, as a Mom, is having my son experience this hardship WAY, WAY too early in his young life. I feel incredibly sad and guilty for this.
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He has heard too many times, “Mom’s tired”.
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It breaks my heart to see his disappointment, but it breaks my heart more that he is used to me being tired. Sometimes, when he sees that I’m tired, he already knows not to ask.
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In the last two years, I became a Mom of two. And that has pushed me to the outer limits of what my body can do. I have been so exhausted. Like running a two marathons back to back.
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And with my three-year-old, it breaks my heart to be too tired for her. To not be able to snuggle her or put her to bed. To have her depend on Dad when all she wants is me. Especially, when she sees me there, standing in front of her.
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It hurts me to think that either of my children think their Mom doesn’t want to help them, hug them, play with them.
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It hurts me to have to turn them away.
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There are so many days that I am angry at my body. Not just that it doesn’t keep up with my kids needs, but that it doesn’t keep up with my spirit, my wants, my desires.
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I sit wishing I could just be “normal” Mom tired. The tired from doing so much because I’m Super Mom. Instead of being tired all day, all the time from nothing. Just because my body is broken.
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So I can’t even begin to give you answers on how to Mom with a chronic illness. I am still figuring it out myself. I am still struggling with it. I am still exhausted all the time. I still feel like I am being asked to choose between my health and my children.
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But I can tell you that the beginning to finding the answer begins with a change of perspective.
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Like, maybe, offering ourselves a little bit of forgiveness and understanding.
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Maybe we forgive ourselves because we and our bodies are doing the best possible. We are trying our hardest, even if the hardest is from our hearts instead of our bodies.
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Maybe it’s about focusing on what we did do instead of what our illness didn’t allow us to do.
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Maybe we understand that we don’t have to be SuperMom to be the Mom our family and children need. Maybe we need to see that, for instance, how we play with our kids in the way our bodies allow us is still playing with our kids. That how we love our kids, with sick bodies or not, is still loving our kids. That though we may not be Pinterest moms, we are still Moms. We are still their Moms.
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Maybe we need to see that giving it a shot and simply showing up does actually make us Super Mom.
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I have come to terms with my children needing Daddy just as much as me.
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In our house we play a little different. My son rough and tumbles with me when I’m well, but he also knows that more often it’s Daddy that he plays chase with. He knows that with Mom, play might just be us sitting together, talking and watching a movie. My littlest is still very young, but she is beginning to catch on too. She loves her Momma, but she knows she has a routine with Daddy. She depends on him just as much. And I am thankful for that!
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And it works. And the kids feel loved. Most importantly, they know they can still rely on me for comfort and to feel safe.
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Just the other day, out of the blue, my son, my sweet little nine year old, calmed this Momma’s heart. He has been the only person to dissipate the heavy guilt that I carry.
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What had happened was I was reading a blog post about another mom with a chronic illness. My son appears and asks what I was reading. I tell him about this mommy who is sick and can’t play with her children very much. I said, “just like mom”. And his reply stunned me: “Not like you. You play with me.” There was no hesitation, there were no exceptions. There was no comparing me to Dad.
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To him, I am not sick Mom.
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I am just Mom.
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So I understand Mom. I understand what you are going through. I understand how immense everyday is.
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I am right there too.
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I understand every hurdle.
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I understand the challenges, the difficulties, the balancing act.
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I understand the feelings of inadequacy, of guilt, of sadness.
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I understand trying to figure out how to be a perfect Mom, despite the limitations of illness.
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But try to see that what your children need is just for you to show up. To be there. To try your best.
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It is the love they will remember above all else.
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With so much love,
Rose
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P.S. Remember to take care of yourself! You can’t help anyone else unless you take care of yourself first!