Parenting Through the Long Covid Fog
8 things you can do to take care of yourself without letting your child feel like life is limited
There is a special kind of heartbreak that comes with parenting while living in a body that doesn’t always cooperate. Sometimes I can feel my illness reaching out past my body and impacting my child’s life in ways I could never have imagined.
The birthday parties I had to miss because I had severe PEM from making a simple cake, the school events I had to skip, the day out that turned into a movie day at home because I was in pain or even the movie day at home cancelled because of a migraine, the vacations my son cant get because travel is very difficult & expensive as a chronically I'll person. Maybe my child is missing things that other children take for granted and that guilt is hard to shake.
So how do we hold space for that grief, ours and theirs, while still offering our children a life full of love, confidence and growth?
This is a work in progress but these are my lessons learned.
1. Acknowledging limitations is not failure
You can (& should, in some instances) be honest with your child about what you can and cannot do. Children are intuitive. Pretending you are fine when you actually are not often creates confusion rather than offering protection. Instead, I say that "my body is in a lot of pain/mommy needs extra rest today, so I can’t do everything unfortunately.” Or I say that “I am sad about it and you can be sad too, but after a while you are going to find something fun to do. When I regain some energy, let us read/draw/watch something/bake together. I love you!"
Being human means knowing and respecting your limits when it comes to your health. Teaching this to your child is not a loss, it is giving them a life skill.
2. Prepare in advance and create small rituals
I am a firm believer in hoping for the best but being prepared for the worst.
I bake (muffins, cookies, pancakes) or make some dishes (soups, sauces) when I can & store them in the freezer - little things I’ve made on my better days. On my bad days, my husband gives them to our son. These are tiny treats from the “past me” who was able to make these with love.
When I visit a hospital or clinic, I try to bring something small and delicious for my son. It’s a ritual, not a bribe, showing that even when I'm away, he is always in my mind.
On the days that I’m sick in bed or away for treatment, I leave my son small handwritten notes or send him emails. Sometimes they’re just a line or two.
We have a few books - a mindfulness book by Haemin Sunim, Thirukkural, Bhagavad Gita or Shakespeare's sonnets - that we read some verses together from and it feels like those few minutes connect us on a bad day.
3. Technology helps us bridge the gaps
When I can't be somewhere physically (school events, doctor's appointments or even homework sessions when I'm away for treatment), we do video calls. I ask a lot of questions, listen to his answers and stories.
It is not the same as being together in person, but we make it our version of presence.
4. Grieve the hard moments and then move towards meaningful actions
Set a timer for your sorrow.
My mother taught me this & it has never failed to get me out of a difficult time emotionally. The timer could be for minutes, hours or days but after that, it is time to see what I can do about it.
It is okay to feel the ache when you miss out or worse, your child misses out, on something because of your illness. I’ve cried in my closet more times than I can count about this but I’ve also learned to gently shift the focus: “Okay, I missed the party but made the cake. We can't do vacations but we'll do local museums & parks in my wheelchair with oxygen. I missed watching him play in a tournament but I was there before when he prepped and hugged him after.”
Meaning can be found in the before and after.
5. Offer the world through philosophy and conversation
When physical energy is low, intellectual connection becomes our playground. I read a lot of philosophical texts and seek out ones that are age appropriate. We explore big ideas together: justice, morality, relationships, world affairs, historical events & characters, literature and even mortality - both in an academic way, but also ithe way children naturally do when you give them room.
I want my son to grow up with depth and flexibility in how he sees the world. We may not go to the beach every weekend (though we live so close by) or travel much now but we’ve wandered through questions most people don’t touch until adulthood. That counts for something.
6. Help them build a support network that isn’t just you
There will be times I simply can’t be there. Widening the circle of other trusted adults he can rely on, such as close friends and neighbors, has improved his life a lot. It takes a village to raise a child. When you are chronically ill, it takes ten.
This isn’t failure. It is resilience. He’s learning that family isn’t just who you’re born to, but who holds you up when needed. Luckily our family support system is also idiculously good and we will never take that for granted.
7. Let them feel - without shame
There are days when my son is extremely disappointed, or mad or very sad and says “It’s not fair.”He is right. It is not fair.
I try my best to not correct that. I just say that he is right, that I wish life wasn't this way either but that we no choice but to get through it together and we might as well do it with love and strength.
I pray every day that that's what he’ll remember, not just the things he missed.
8. Redefine what a “rich” childhood looks like
My son may miss certain activities or experiences but he’s growing up knowing how to adapt, how to find joy in small things, how to give and receive care, how to love people who live in imperfect bodies.
He’s learning that a full life doesn’t look the same way to everyone, it may not even look the same to one person in different stages of their life. Life, with all the limitations that chronic illness imposes, can still be meaningful.
Some final thoughts
Living with chronic illness while raising a child is not a detour. It is just a different road, a road no one expects or wants to take but may have to travel through if fate so wills. Along that road, there are notes tucked into bedside tables, frozen cookies ready for hard days, and long talks about big ideas.
In sickness and in health,
Renuka