When My Son Reminded Me Why 'Sick Mommies' Don't Need to Feel Guilty

Mommy guilt… I think we’ve all felt it at some point! Mothers with chronic illnesses may have an extra layer of Mommy Guilt: We feel guilty about our illness and wonder how it might be affecting our children’s well-being.

This Mother’s Day, I want to encourage “sick mommies” to remember: We still have a lot to offer our children!

I hope my story strengthens your spirit.

Sometimes I get lost in grief, when I think about the type of mother I can no longer be.

Before, I was an active and sociable mother. I went on long walks with our little man almost daily. My survival mantra? Get out of the house in the morning! While our son tirelessly climbed and swung and slid at the playground, I would chat with the other moms. We’d have a laugh and moan about the “joys” of motherhood: the sleep deprivation, the toilet training, the vomit episodes, the public tantrums.

It was so therapeutic! We’d share snacks and lend baby wipes. We’d laugh at the cute things our kids said and did. The camaraderie buoyed me in those first years as a mum. And all those sunny days I spent outside with our little boy… Some of the happiest days of my life.

Before, I was a working mother. Returning to work part-time when our son was a toddler gave me a sense of accomplishment, and even (dare I say it?) freedom. Who would have thought that going to work could feel like a welcome break?! But I still remember the thrill of seeing the little guy again at the end of the day. Bliss… Pudgy fingers reaching towards me as soon as I enter, like petals opening in the sunlight. I’d grip him in a bear hug until he could hardly breathe, overjoyed to see him again. My work also supplemented our family income. The five-year plan was to move to a “family home” once child number two came along. So much for that plan! I got sick two weeks before our second child was born. Oh, how “our future” has changed!

Now I’m a mother who spends most of her time at home. Alone. Resting. Carefully pacing my physical and cognitive activity in order to maintain homeostasis. Do too much and I can be sick for days, sometimes weeks or months. The social isolation has been perhaps the most grueling aspect of life with a debilitating neurological illness. Typically I am brimming with motivation, but I lack the physical capacity to do the things I love. When I am well enough to briefly leave the house, there are no outwards signs of illness. I look fine!

Understandably, it’s very confusing for people. They say well-meaning, “encouraging” things like, “You look well! Are you getting better?” I suppose it’s a bit like a battery that’s flat: Put it next to a fully charged battery and there’ll be no visible difference. It’s not until you try using the flat battery that the difference shows. At a glance I look well; spend an hour or two with me and my illness shows.

Now, I’m neither a stay-at-home mom nor a working mom. I’m not even capable of being a proper housewife! Oh, how I mourned this loss of identity in the early days of illness. My husband, and the kids’ grandparents, were burning themselves out while I lay in bed longing to be more “useful.” An aching, toxic guilt slowly smothered my spirit. Having our kids spend most of their time away from me was certainly not part of the plan.

I yearned to spend time with them, like I had with our son when he was small. I even missed the less-pleasant tasks we used to do together, like grocery shopping! Lying alone in an empty home day after day, being sick year after year, I felt cheated. This illness was stealing from me the precious years-you-can-never-get-back of their infancy, and I was powerless to change it. I think I’ve cried just as many “separation anxiety” tears as our kids have, at daycare drop-off, since falling ill! My tears have just been less public.

But something beautiful happened last Mother’s Day, something that soothed my grief. It was a real turning point for me. Our son brought home a handmade Mother’s Day card from daycare. My heart throbbed when I read its sweet personalized message, dictated by our little boy (who indeed loved long cuddles on the couch) and typed by his caretaker.

What unexpected joy this simple statement brought me! And what a relief when I remembered: No other woman loves our two kids the way I do. I am their one and only Mommy, the woman who cherished them before they were even born.

I realized something else: I’d been allowing a sense of inadequacy to cripple my confidence. And that toxic guilt steadily gnawing away my joy? I saw just how unnecessary it was — I hadn’t chosen to be sick! Gradually, and with professional help, I was able to acknowledge the terrible reality of my losses, while also gaining a new perspective on my “new” life.

So, yes, our children do have a sick mother, but they also have a mother who loves them with her whole heart. She may not be with them all day, but when she is with them, they get cuddles and kisses galore from a mommy who’s relishing these early years — when kids love all that attention! A mom who makes them feel cherished and wanted… What else does a small child need?

Our children have a sick mother, yes, but they also have a mother who always aims to be consistent and “present.” She has set up morning and evening routines at home, to help the kids feel secure. She comforts when they’re frightened or sad; she coaches when they’re angry or sulking; she lets them be silly and totally wild sometimes. Yes, it’s done in very small snippets, usually from the couch or the carpet where she’s reclined, but that’s good enough. A mom who does all she can to meet her family’s emotional needs… What else does a small child need?

Our children have a sick mother, yes, but they also have a mother who seeks help when “believing in herself” and “positive thinking” simply aren’t enough. Life will throw many challenges at our two children — life does that to every human being!

I hope our children might be strengthened by my example. No, it’s not the example I would have chosen. Before getting sick, I wanted to be the hero of their story. I wanted to model a strong work ethic and an active lifestyle. I wanted our daughter to see in me a woman being more than “just” a wife and mother. Well, that’s no longer the example I can set — I’m not even in the running for the Superwoman or the Supermom titles!

But I can still be an example to them. I can model one of the most valuable truths in life: We don’t thrive on our own strength alone; we thrive in community. These days I’m a person who must rely on others to get through daily life. But isn’t that true of us all to some degree? We just may not like to admit it!

With help from family, friends, and workers in our local community, we are thriving as a family despite my ongoing illness. A community of people working together, and weak-but-strong role models… What else does a small child need?

So, I may not be the active mother I used to be, or even the independent mother I wish I could be. But I do know this: I am the mother our kids need me to be. And that has made me tearfully glad this Mother’s Day.

“My mommy is the best because… ‘She makes me happy when I’m sad. She gives me cuddles.’”

Our daughter is now old enough to understand Mother’s Day for the first time. I read that sweet quote in a daycare “learning story” just before publishing this post… What a perfect ending!

Follow this journey on Fruitful Today.

The Mighty is asking the following: Are you a mother with a disability or disease? What would you tell a new mother in your position? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.