When love and exhaustion live side by side
Some days feel like a contradiction. In motherhood with a child with Down syndrome, there is so much love it almost hurts—and at the same time, a weight that presses on every thought and movement. These feelings don’t cancel each other out. They exist together, constantly shifting, constantly asking to be held at once.
I am raising a four-year-old daughter and a two-year-old son with Down syndrome, while eight months pregnant. Life right now is not slow, not quiet, not simple. It is full—beautifully and painfully full.
A week of answers: both relief and worry
Last week was filled with medical appointments for my son. The kind where you walk in hoping for clarity but leave carrying both hope and heaviness.
There was good news. His ears are healthy—no inflammation, and he can go swimming again. One ear hears, the other does not, just as we’ve known since he was six months old. That part hasn’t changed, but at least it hasn’t worsened.
Even more comforting was hearing that his emotional and social development is strong. He connects easily, he is present, attentive, joyful. It was said clearly—he is a child who has received love, care, and attention. That matters. That means everything.
But there were harder truths too. His developmental delay is significant, both motor and cognitive. When he turns three, he will need specialized support—either a special group or a personal assistant in kindergarten. The problem is simple and devastating: those services don’t exist here.
When the system has no place for your child
We live in a place with one kindergarten and four large groups. That’s it. Staying home long-term is not recommended for him—but what happens when there is no alternative?
There is still a year to figure it out. A year that feels both long and far too short.
The invisible weight: a mother’s mental health
What surprised me most was not just the concern for my son—but for me. Specialists worry about my mental health. And they are not wrong.
Exhaustion is constant—physical, emotional, financial. We recently moved. My son cannot walk independently, so I carry him often. My daughter is strong-willed, full of emotions, and our days are filled with power struggles and love in equal measure.
I feel physically well in this pregnancy. But I know almost nothing about the baby growing inside me. I’ve avoided examinations out of fear—fear of judgment, of harsh words, of being treated the way I was before.
Fear of being judged instead of supported
When I was pregnant with my son, I was met with criticism—from medical staff and from people around me. Not support. Not understanding. Words that stay with you long after they are spoken.
And so now, I hesitate. Even when I know I need care.
On Tuesday, I will go to my first ultrasound. After two emergency C-sections, this one must be planned. Doctors need information. I know that. Still, the fear is there.
Finding minutes for yourself in a day that never stops
With two small children, finding time for yourself feels almost impossible. There is always something—feeding, cleaning, lifting, comforting, organizing, driving to appointments.
But I try. Even a few minutes. Just to sit. To breathe. To exist without being needed.
Sometimes, that is all there is.
Small moments that keep me going
Yesterday, we went to a birthday party. Two hours of simple joy—good food, children laughing, swings, running, slides. We left early because the evening air turned cold and my son was sitting still too long.
But those two hours mattered. We left before the children got tired and arguments started. It felt like a small success.
My social life is nearly nonexistent. There is no time or energy to maintain connections. So moments like these—children’s events, short conversations with other parents—become meaningful.
Today, we invited our 80-year-old neighbor for coffee. We’ve only lived here a month, but she already feels familiar. The children adore her. It was a simple, warm conversation—something I didn’t realize how much I needed.
A life that never pauses
Tomorrow, therapies again. An hour’s drive to the city for rehabilitation doctor and physiotherapy appointments. Swimming will have to wait this time.
I will take my son with me. My partner will be at work. My daughter will be at kindergarten.
And still, people say: “What do you even do at home?”
The truth feels almost absurd—I cannot remember the last time I was just at home. Truly resting. It hasn’t happened in four years. Even at home, it is constant care, constant movement, constant responsibility.
The loneliness of not being understood
It is hard not having a support system. I haven’t fully connected with people here. When I try to express that things are difficult, the response is often blame:
“You chose this life.”
“You had these children.”
“You decided to move.”
But how does that help? Since when does blame make life lighter?
If we treat struggling people this way, we don’t build a better society. We just make it lonelier.
Gratitude in the middle of chaos
And yet—there is good.
Our new apartment is beautiful, spacious, clean. The children have room to grow and play. The local municipality has supported us in meaningful ways—transport to the city, help with housing issues.
These things matter.
What keeps me here
Right now, what holds everything together is love.
Love for my partner.
Love for my children.
Gratitude for the baby growing quietly inside me—so calm, so gentle, giving me the strength to keep going.
That is what keeps me standing, even on the hardest days.
You are not alone.
If this story resonated with you and you’d like to go deeper, you can explore my e-book Our Journey – A Different Path. It offers honest reflections and lived experience beyond this post.
If you’re looking for practical support, I’ve created Routine Templates to help parents and children navigate daily life with more clarity, structure, and understanding.
You can also read my previous posts or follow along on Instagram @parentguidancehub, where I share everyday reflections on parenting, family life, and finding balance.
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