Not knowing the cause of Benjamin’s condition, or its likely prognosis, I am constantly alert for new symptoms, new complications, new things to worry about. Yet when I do notice anything is ‘not right’ with him, my response veers, wildly and randomly, between two extremes.

On the one hand, I panic about every little thing. That time when, on the hottest day of the year, I dragged him around the city all day and then wondered why his feet were slightly swollen. Deep vein thrombosis? Kidney disease? By the time I’d scrutinised his squidgy pink toes for an hour I couldn’t remember what shape they normally were and whether they were in fact swollen at all. Each day I ask myself “is his breathing noisier than usual?” “are his eyes gooier?” “his hands colder?”

On the other, I’m completely blasé about things that, in my neurotypical daughter, would send me running to A&E. Repeated vomiting? Just a recurrence of his reflux. Laboured breathing? A product of his muscle tone. Hasn’t pooed for a week? Give him a dose of lactulose and stand back…

Families like ours certainly get a rather warped sense of ‘normal’. When I posted on a Facebook group about Benjamin’s potential kidney disorder (see above), another SN mum commented that her son’s kidneys were perfectly normal “despite being the wrong shape, in the wrong place, and with the wrong blood vessels attached to them.”!

There is a meaning to this madness. Any new symptom does need to be checked out, in case it could be painful, dangerous, informative, or a completely unrelated childhood illness in need of treatment. But once it is added to Benjamin’s ever-growing list of symptoms, perhaps with a new medication alongside, that becomes another part of our ‘normal.’ And if one of these symptoms is a little bit worse one day we, like many parents, have to weigh up the costs and benefits of dealing with it at home or dragging an infection-susceptible child into a germ-laden GP’s waiting room or hospital.

On the occasions when we are in hospital, where I hasten to add we have also received exemplary care, our role is to help the medical staff understand exactly what constitutes Benjamin’s ‘normal.’ Generally I’ve found, with a complex child like Benjamin, the staff are only too happy to listen. Just occasionally do I feel a bit like I’m beating my head against a brick wall. On our recent visit for a gastrostomy, Benjamin was behaving as he normally does when unsettled, in pain, hungry, tired or out of his routine (he was all of those things) by stiffening his body which consequently tightens his chest and makes his breathing very laboured. So instead of a relaxed couple of days on the surgical ward following the successful operation, we found ourselves rushed down to a noisy, bright, bustling respiratory ward and subjected to constant respiratory checks. This of course made his stiffness and breathing even worse. It took a couple of days to convince anyone that the only thing that was going to solve this was to take Benjamin home to his familiar cot, familiar toys, familiar sights and sounds, and let him sleep and feed in peace.

Now I understand that not every doctor can be conversant with every feature of every child. I understand that complications can occur after any operation and it’s better to be safe than sorry. The best we can do, as parents, is to work with the medical professionals, to become the expert on our child, and to trust that we are the expert on our child. To try not to be intimidated by ever-changing conditions and circumstances out of our control. To trust our instincts, because those instincts are usually based on a knowledge and experience far deeper than we may realise.

In the best possible hands

In the best possible hands


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