How a chronically ill child shapes their siblings

Our two children were three and one-and-a-half years old when my husband and I decided: we wanted a third child. Before making that decision, we asked ourselves whether, with three children, we would have enough time and energy for each of them. Our answer was yes, definitely. One pregnancy later, our little miracle – a daughter with a rare condition – joined our family, and the question arose once again.

This time, however, it didn't come from us, but from those around us. Suddenly, we were confronted with the reality that a sick child takes up a lot of space – and with the question of what that means for everyone involved. How have we organised things so that nobody is left out? I'd like to address this question now, as there's rarely time for such thoughts amidst the chaos of everyday life.

Additional challenges in family life

Day-to-day life with young children can be demanding – even for families with healthy children. However, what concerns us most – beyond the everyday worries – are the visible and invisible challenges. Among the visible challenges are the countless therapy sessions that intrude on our family life: regular speech and language therapy, physiotherapy, early intervention and numerous hospital visits.

We also face invisible challenges – such as waiting for blood test results, which seems to go on forever, even if it only takes three days.

This calls for a well-organised diary and patient siblings who have to tag along , grumbling now and then. Or a helping hand when therapy sessions and the older two's school finishing times clash. Fortunately, in urgent cases, we can count on the grandparents to step in at short notice. After all, not all conversations with doctors are meant for children's ears.

Our invisible challenges are the worries and thoughts that inevitably creep into our family life. When waiting for the blood test results seems to go on forever – even if it's only three days. When outsiders tell us that our child looks perfectly healthy, whilst we're fighting back tears inside. Or when I recently found the old weaning brochure whilst having a clear-out and realised how little clarity we've gained since then.

The emotional support provided by siblings

Whether our daughter's situation takes centre stage to a greater or lesser extent depends on many factors. If she has an inflamed feeding tube exit site, I spend the afternoon in A&E and her siblings are with Grandad. When she's feeling well, I take the older ones to the playground and the little one comes along in her pram. To the outside world, none of our children receives significantly more or less attention – at least not on a permanent basis.

However, as parents, it is difficult for us to gauge just how much our children are quietly coping with. We have come to realise that whilst our attention can be divided, emotional strain cannot. For although our older children are healthy, they are affected by the younger ones’ illness.

«What about your sister?» our colleague asked our six-year-old son. He replied, «She can't feed herself, so she's on a feeding tube.» And that was the end of that.  

In Switzerland, an estimated 260,000 children are growing up with a sibling who has a chronic illness or disability. It is said that these so-called «siblings of children with disabilities» learn at an early age to take on responsibility and to be strong. At the same time, many feel overlooked and are exhausted.

A sense of normality in everyday life

Our children are now six and four and a half years old. They look after their sister very well. They comfort her, help her and explain things to her. If she wants to go and play whilst her feeding pump is running, both of them are immediately on hand to carry her feeding tube rucksack for her.

Whenever she's in pain, our four-year-old sings songs to her. Our son asked the other day, after having had a fever for two days, why he always gets better so quickly whilst his sister takes so long to recover. Although we try to explain such situations in a way that's as child-friendly as possible , our children are still at an age where complex medical matters aren't really within their grasp. At the same time, we're constantly surprised at how matter-of-fact our six-year-old is about illness.

He recently celebrated his birthday and invited four friends over for lunch. The lads ate pizza whilst I hooked up the tube feed for our little one in her Tripp Trapp. The boy sitting right next to her asked our son, «What about your sister?» My son asked him twice what exactly he meant. I was amazed at how much this had already become the norm for him. And I was even more astonished by his clear, diplomatic reply: «She can't feed herself, so she's fed through a tube.» And that was the end of the matter.

Time together

Even though the siblings cope well with our day-to-day life, we always try to ensure they don't have to shoulder too much of the burden. There's one thing in particular we can do to achieve this: make a conscious effort to set aside time for each child individually. Our youngest isn't automatically the centre of attention because of her illness.

Even so, it's not really possible to fit in deliberate moments of togetherness in our jam-packed daily lives. So, whenever our diaries allow, we make a point of setting aside regular one-to-one time with one of our children. Then we enjoy a «mum date» or «dad date» with one child at the cinema or a spa – and we cherish that shared memory for a long time to come.