Stellinka
Our Stellinka is five and will turn six in December. She is a smiley little girl who, despite her severe disability, can take enormous joy in the smallest things. She loves music, water, being with the people close to her and moments when there is something going on around her. Sometimes all it takes is ordinary play, a nursery rhyme or a bit of fun, and she laughs from the heart. And those are exactly the moments we treasure most.
Stellinka came into the world in very difficult circumstances. During birth she was starved of oxygen, which caused extensive brain damage. Today she lives with cerebral palsy and a severe form of epilepsy. She cannot walk or talk and depends on us completely. She needs round-the-clock care, whether that means everyday activities, positioning, physiotherapy or health problems.
The beginning
The beginning was very hard. I don’t think you can even admit to yourself at first how much your life is going to change. For a long time I believed we would catch up on everything with physiotherapy, that Stellinka would gradually start to develop and that one day we would live a more or less normal life. Slowly, though, it sank in that our reality would be different. And honestly, I don’t know whether anyone ever fully comes to terms with something like that.
There are days when we handle everything calmly, and then there are times when it is simply hard. Like when Stellinka is crying and I can’t work out what hurts or what she needs. At the same time, we don’t want our whole life to be defined by diagnoses. We also have a younger son, Mateo, and we try to give both our children a childhood full of shared experiences, joy and love.
What matters to us
Like every parent, I suppose, what we want most is for our children to be happy and healthy. With Stellinka, though, that wish takes on a slightly different meaning. We know we can’t give her a life without limits, but we can do everything possible to make it as pleasant and varied as it can be, and to make sure she is part of everything we do as a family.
We don’t want her childhood to be only about doctors, physiotherapy, therapies and medical equipment. We want her to discover the world, feel the wind in her hair, listen to the sounds of nature and spend time with us and with her little brother.
Our priority, of course, is her health, her comfort and good care. But right next to that comes time together. Because even though there are many things Stellinka can’t do on her own, that doesn’t mean she can’t experience them with us.
When a day out becomes an expedition
You don’t even notice how many ordinary things you take for granted until you have to deal with them in a completely different way. For most families, a day out simply means packing a bag and setting off. We have to think about whether we can reach the place with a stroller at all, what the terrain is like, whether Stellinka will be comfortable enough and whether we can manage everything she needs during the day.
Suddenly you realise that even an ordinary walk in the woods can be complicated. That a beautiful place you’d love to visit may simply not be accessible with a child in a wheelchair or a medical stroller. That’s what upset us. We love nature, trips and spending time outdoors together, and we didn’t want to keep looking only for places you can comfortably reach on tarmac. We also have a younger son, and we want him to be able to explore the world, run through the woods and have adventures. We don’t want either of our children to miss out because of the other’s limitations.
How things got moving
(xROVER is an all-terrain stroller that a companion pushes or pulls, and it can be adapted to the individual child and to the kind of trip.)
If I remember rightly, I first came across xROVER somewhere on social media. What caught my attention most was that it is made for rougher terrain too, because that was exactly what we often missed with ordinary medical strollers. A big plus for us was that they came to our home to show it to us. We could look at it at our own pace, see how it works and, above all, judge whether it might suit Stellinka. When choosing, the most important things for us were her comfort and safety, but also that the stroller wouldn’t hold us back so much on family trips. We didn’t want to be limited to tarmac and perfectly kept paths.
What has changed
We’ve already done quite a lot with our xROVER. We took it to Slovenia, where we even got around in deep snow, we travelled through Austria, and we use it all the time on forest tracks and walks in the countryside. That’s where I see its biggest benefit: we don’t have to plan every trip around whether the path is perfectly flat and suitable for a standard medical stroller. Of course we still have to think about what Stellinka can manage and which conditions suit her, but thanks to the xROVER we have far more options.
What makes me happiest is that we can all be outside together. Maty can explore the woods and run around us, and Stellinka is right there with us for all of it. We don’t have to adapt family trips so much to the limits of an ordinary stroller.
When I think back to Slovenia and all that snow around us, that is exactly the kind of experience we want to share as a family. For some people, a trip into snowy countryside is nothing special. For us it is something we really value, because it isn’t just about getting somewhere, it’s about all being there together.
A message to other parents
I’d like to tell them not to be afraid to look for possibilities and try new things, even when it seems complicated. I know only too well that with a severely disabled child it isn’t always easy to go anywhere at all. Sometimes you’re tired before you’ve even started packing, and sometimes there’s simply no energy left for anything but getting through the day. But if your child’s health allows it, I think it’s worth looking for ways to experience something together outside the daily routine. It doesn’t have to be a big trip. Sometimes a short walk, a moment in nature or an ordinary afternoon away from home is enough.
And to other families I’d say this: we don’t have to live the same life as families with healthy children to have good moments. Our life is different, in many ways harder and sometimes truly exhausting. But it is still our life together, and I don’t want us to be left with nothing but memories of hospitals, physiotherapy and the worries of care. And above all, you are not alone in this.
After a hard start, Stellinka and her family found their way back to simple pleasures: the woods, the view from a hilltop, the trips you remember for a long time. Often it begins with an ordinary decision to head outside.
The xROVER all-terrain stroller is made by the Czech company Volter.