Sometimes we hit pause and cuddle under the blankets
By Anchel Krishna
When I think about parenting my daughter with a disability, I picture a marathon.
This is long-haul parenting. There is no neat finish line where the challenges stop and traditional milestones are achieved. The systems we navigate, the therapies, the equipment, and the advocacy unfold over years and decades. We try to pace ourselves, conserve energy and think about sustainability.
But our marathon has a twist. It is peppered with sprints.
Suddenly you hear a whistle, or think you hear a whistle, or feel like someone is going to blow a whistle, and you need to run full out.
You might be settling into a rhythm. School is going reasonably well. Equipment is working. Appointments are spaced out enough that you can breathe a little. Then something goes sideways.
An illness. A change at school. A funding deadline. A form that must be submitted today or you risk losing access to something your child relies on.
Suddenly you are sprinting, even though you need rest and endurance to manage the long race.
It is exhausting.
The truth is that many of us live in a state of constant vigilance. Sometimes when things are calm, I find my brain doing something strange. Instead of relaxing, it starts scanning the horizon for threats.
What am I forgetting?
What should I be doing next?
Am I doing enough?
What do I need to worry about?
That may feel familiar to most parents. But it takes on an urgent tone when you are thinking about your child with disabilities. There is a sense that one decision might ripple far into the future, or that a missed opportunity could shape your child's path in ways you can't anticipate.
You try to think five steps ahead, while also getting through the day in front of you.
Meanwhile, you're bombarded with information about stress and your nervous system.
Open social media and you see reel after reel explaining how chronic stress impacts the body. High cortisol. Fight or flight. Nervous system dysregulation.
Sometimes I watch those videos and think, well yes. That checks out.
Caregiving, particularly long-term, has a physiological impact. Our bodies carry it. The tension, the vigilance, the mental load of managing complex systems while also trying to be a present parent, living and enjoying your life.
Reduce your stress, they say. There is often an expectation that we can simply regulate our way out of it. Take breaks. Meditate. Go for a walk. Do breathing exercises.
Many of those things help. I do some of them myself. But these exercises require a certain level of privilege. Time and access at a minimum, and for most parents of kids with disabilities, these are complex commodities.
Sometimes the stress isn’t something you can easily remove. How do you pace yourself when everything feels urgent?
I don’t have a perfect answer. I suspect none of us do.
Over time I have learned a few things that make our marathon with sprints a little more manageable.
The first is that you cannot sprint all the time.
It sounds obvious, but it is surprisingly hard to practice. When you are used to problem solving and advocating and anticipating, your brain can get locked in that mode.
I have learned that sometimes the most important decision is choosing not to chase every possible worry. Not every future problem needs to be solved today. If we try to operate at emergency speed all the time, we burn out long before the race is over.
The second thing I’ve learned is that urgency can distort our thinking.
When everything feels high stakes, it is easy to believe that every decision is permanent and irreversible. In reality, many decisions can be revisited.
Schools can change. Equipment can be adapted. Plans can evolve as our children grow and show us who they are. That perspective helps soften the pressure a little. We are not writing our child’s entire future with each choice. We are making the best decision we can with the information we have today. And then we adjust as we go.
The third thing I remind myself is that presence matters. My daughter teaches me this.
While I am thinking about the next appointment or the potential challenge, she is focused on what is happening now. A joke at the dinner table. A song she likes. A funny moment from the day.
Her life is not an abstract future. It is happening today.
That perspective is important because when we talk about caregiving, it can sound like the story is only about struggle.
But our children are not just the centre of our worry. They are also the centre of our joy.
They are brilliant and funny and stubborn and creative and complex. They surprise us. They challenge us. They expand our understanding of the world.
Yes, parenting a child with a disability requires endurance. And there are moments when the pace accelerates and you must run hard.
But there are also moments when the pace slows.
A quiet evening at home. A shared laugh. A small milestone that might not make headlines but means everything to your family.
When Syona was much younger and things got overwhelming, we stopped for a day. We cancelled appointments. We hit pause. We played, we danced, we laughed. We gave ourselves a break and filled our buckets by spending time together just being.
We still do that now that she’s a teenager. Last weekend I announced that Saturday was a “chill” day. It meant a day with no agenda, no demands and no pre-set appointments. We hung out. We got takeout. We cleaned up the messes we made at a relaxed pace. We slowed down. And it was exactly what we needed.
Those slow moments matter just as much as the sprints.
They are what make the marathon worth running.
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