Jaimy (36): "I am a stay-at-home mom, but ill, and my 11-year-old son is my caregiver"

A mother who can't always provide care

I always wanted to be the mother who is always there. But I am not that for Micha (11). I want to be a mother who stands on the schoolyard, fills the lunch boxes, plays games on Wednesday afternoons, and bakes cookies on Sunday. But over the past few years, that image has completely changed. I am sick. Chronically sick. And that's not something you can just fix with rest or medication. I have completely lost myself. And there's absolutely nothing I can do about it! I see myself through the eyes of others, the mother who can't participate, who often cancels. I tried for a long time to hide that, to not become 'the sick one' in the eyes of my children, and everyone around me. But my children feel and see everything, even when I don't say it. Yes, my illness is invisible, but present in every gesture, every moment of rest, every silence (that actually lasts too long). I know that my illness does not equate to weakness, although sometimes it does feel that way.

Micha's new role

At first, I tried to hide how bad things were going. For Micha, especially. He was only nine when I couldn't go outside for weeks at a time.
I would say that mom needed to lie down because I had a headache, but of course, he saw much more than that. He noticed how I walked hunched over, how I would stop talking in the middle of a sentence, how I sometimes burst into tears for no reason. Children sense that flawlessly. He didn't ask questions, but he helped naturally, as if he instinctively knew what I needed. Bringing a hot water bottle, laying a blanket over me, just holding my hand for a while. Those kinds of small things that are actually big. Micha is so incredibly sweet. So caring, by nature.

Ronald, the father who tries everything

My husband Ronald works full-time. He has to, we only have one income, and his job keeps our family going. He wants to be there for me, but he can't manage everything. He leaves early in the morning and comes home late at night. Sometimes he crosses paths with Micha in the hallway: one going to bed, the other still working. Life has become a schedule, a puzzle where no one seems to have enough hours. It drives me crazy. We have a shared calendar on the fridge, full of lines, names, and times. Our life resembles a military operation. We laugh it off. But behind that laughter is actually fatigue. Ronald carries the care, the finances, and my worries all at once. Sometimes I see the way he looks at me, lovingly, but with concern. We are all afraid that I will break. And I am too... Because how long can I keep this up?

Micha as a young caregiver

I only recently found out that what Micha does has a name: young carer. There are more than 400,000 in the Netherlands, children who care for a parent, brother, or sister who is ill. And of that group, more than one in four feels overwhelmed. When I read that, I was shocked. Because that's my child. He should be thinking about soccer, about tests, about his birthday, not about my medication or whether I have eaten enough. Sometimes I watch him as he falls asleep, his face still childlike, but his shoulders already mature. I often wonder what he feels, what he might not say to protect me. He doesn't want to burden me further. He doesn't talk much about my illness, but his eyes tell me enough. There's a worry in them that's too big for his age. I hope he understands someday that he was my silent savior. That we had no other choice. That his care kept me going.

I oscillate between pride and guilt

I am proud of him, I can't deny that. How many boys his age can handle something so difficult with so much love? But at the same time, I feel guilty. Because this isn't normal. Not healthy. Naturally, I feel guilty for not being the mother I should be. Guilty for him doing tasks that should be mine. And guilty for making his childhood difficult.
Every time Micha does something sweet, I feel my guilt grow. It's so heavy. Yet I also know that love is abundant in our house. And that's beautiful on the other hand. We still laugh, we joke, we sing along loudly to music. And yes, we often dance too (Ronald and Micha, that is). Maybe that's our way of surviving: seeking light in the darkness.

Hope for breathing space

I long so much for an ordinary day. A day when I don't wake up in pain, but with fun plans. To make breakfast, fill lunch boxes, and cycle to school without feeling guilty. Oh, that would be awesome! I know things will never be the same again, but hope is persistent. Micha sometimes says: "If you get better, mom, we'll go to Efteling." And then I laugh, knowing that will remain a dream. But dreams keep us going. Sometimes I think that illness doesn't just take away, but also adds something. You see the world in smaller things, a smile, a hand, a cup of coffee. I am happy with the little things. They are certainly not grand gestures, but they keep me standing.