As my child grows, so does her need for care
By Anchel Krishna
When my daughter Syona was small, people would say things like “It will get easier as she grows” or “Once you’re past the toddler years, you can finally catch your breath.” I wanted to believe them, but our path as parents of a child with a disability has not followed the same arc.
For us, things have not become easier. They have become different, more layered and, at times, more overwhelming. I was warned about this by parents a few steps ahead of me, but it was impossible to fully understand until I experienced it myself. And now that we’re in it, I know that this will likely continue to be true and compound as Syona gets older.
Over time, this is how parenting demands have increased in distinct areas of our lives.
Equipment
In the early years, the gear felt manageable. As my daughter has grown, the equipment has multiplied and expanded in both size and complexity. A wheelchair takes up more space than a stroller ever did. Bath seats, lifts and standing frames are not small items that tuck away neatly. They take up both physical and mental space and require constant maintenance.
There is funding, but it never covers the true cost. Every piece comes with add-ons, modifications and repairs that seem endless. Add in the time required while you wait for approvals and funding, and equipment can be a huge source of stress and frustration.
Equipment requires constant adaptations on our end. For example, Syona often goes in her standing frame to eat. It’s an efficient way to make sure she weight bears, while doing something she enjoys. Combining the two activities also saves us some time. But now, because of Syona’s size and the size of her equipment, she towers over me when in her standing frame. So when she eats, I stand to feed her.
Care
As children age, the care they need changes. Unlike with a typical child, who gradually learns to take over their own care, my role as caregiver has only deepened. I am still coordinating, scheduling, and advocating, as well as lifting, feeding and assisting.
Brushing teeth, transferring her from chair to bed or figuring out how to take her to the washroom when we are out there in the community are very real everyday moments, despite the fact that Syona is a teenager. These moments don’t look extraordinary to the outside world, but the physical and emotional load builds. And there is no natural end point where she suddenly does these things herself.
We are also fortunate to have some support for Syona’s care. But the pool of people willing to do personal care for an older child has decreased.
Size
This one is simple math. Kids get bigger, heavier, taller. Parents get older. My back is not the same as it was 10 years ago no matter how carefully I try to protect it. My daughter needs to be lifted, repositioned, and moved in and out of equipment. Each year the gap between her growing size and my diminishing strength widens. It shapes every plan we make for the future.
Programs and supports
Another thing that shifts with age is access to programs. When your child is young, there are many programs—both adapted and not—for little kids. Once they hit certain ages, doors quietly close. Slowly they become the oldest ones in local camps as kids start to take care of themselves in the summer, programs disappear or they are no longer eligible.
I am constantly searching for age-appropriate recreation that is truly accessible. You don’t stop wanting your child to be included in sports, arts or social activities just because they are older, but the opportunities shrink.
Costs
Underlying it all is cost. Everything is more expensive once your child needs adult-sized versions of supplies. Adult incontinence briefs cost far more than diapers ever did. Everything comes with a higher price tag. Funding exists, but it rarely covers everything. Parents are left scrambling or quietly absorb the expenses.
Concerns
As my daughter ages, my worries evolve too. In the early days I worried about milestones and whether she would meet them. Now I worry about adulthood. What will housing look like for her? Who will care for her if we cannot? What happens when we are gone? These are questions without easy answers, yet they sit in the back of my mind every day.
We’ve been fortunate to find and build community and have a close network of very supportive family. But as life gets more complex, it gets harder. Or maybe we are just more tired of explaining or verbalizing our concerns, which then isolates us a little more.
And yet, I cannot write this without also acknowledging that I know we can do this. Even if we don’t know how yet. In the hardest moments I remind myself that so far, we are doing it, even if it felt like we never could. Some days get 150 per cent, and some days get just the bare minimum to get through the day. Both of those are fine. We are doing the best we can at any given time.
I notice small joys I might have otherwise missed. A hot cup of tea sipped while my daughter listens to Taylor Swift makes me feel like the world is the most beautiful place. When Syona cracks a funny joke it makes me laugh so deeply, straight from my belly. And those sounds, those moments fill our world and really give us the energy to navigate through the toughest of things.
Aging brings complexity. That is certain. But it also brings experience, love that has matured in the best possible way and gratitude that occasionally goes silent, but runs very, very deep.
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