I don’t believe in mother’s intuition. I don’t have a sixth sense where Benjamin – or any of my children – is concerned. Three times around, I had no hunch when I was pregnant, no idea when I was going into labour. I’ve rushed Jackie to the GP with ‘appendicitis’ which was just sore glands, and Caitlin with conjunctivitis which wasn’t. I panic that I’ve picked up a stomach bug … then remember I had jalapeños on my lunch.
But I do believe in accumulated experience, especially where Benjamin is concerned (he’s packed a lot of medical experience into his three short years so far). I do believe that no-one knows Benjamin quite like I do. That no-one has sat up night after night with him like I have. No-one’s ear is as attuned to his breathing, no-one’s eyes to his skin colour. No-one remembers which symptoms have later proved serious and which have evaporated into thin air. No-one else wakes up automatically just before he has a seizure or starts to choke. Even I, consciously, don’t know what my unconscious memory knows.
Time and time again, he’s been a bit poorly, nothing we can’t deal with, nothing you can put your finger on, but each time I’ve taken him up to A&E after a few hours – or even by the time we’ve arrived – he’s deteriorated to the extent that there is now no question whether he should be there. Take last week: he had a cold, more secretions than usual, needed some more suction, but his saturations were good; nothing I, in theory, couldn’t handle. In A&E we triaged at a meagre level 3 – we even spent some time in the waiting room! Yet a few hours later he was vomiting canary-yellow slime (all credit to the first year medical student who kept it together and went rushing off for a sick bowl) and having repeated seizures. Somehow, I usually make the right decision and get him to the care he needs in time.
Benjamin is a brave boy. Silent, stoic, smiley, he saves the worst of his pain only for Mummy. I get more tears than anyone else because it’s only in my arms that he will let go and show how tired he is, how sore he is, how unwell he is feeling. It breaks my heart when he whimpers in my ear but at the same time I feel honoured that he chooses me, thankful that he can tell me, and terrified of the responsibility. Who will he tell when I’m not there? Who will understand what he is telling them? Who else will ‘just know’ when something’s wrong? What if he’s at school? What if I’m sick? Who can know Benjamin like I do?
That’s why I’m glad that it’s not just mother’s intuition, because while intuition can’t be shared, experience can. And that’s why I need to start sharing, letting go, letting people in. We need a team of people around Benjamin who can read his signs and symptoms, who understand how he communicates and can interpret his language. Who don’t need to go through his three-inch-thick folder of medical notes to remember the last time he displayed with similar symptoms. I’m so grateful that the first people who will be on the frontline – his fabulous nursery teachers – are fully engaged with this (thank you, ladies, you know who you are).
It is so scary to have a child in hospital. But it’s even more scary to feel out of control, sidelined or disregarded in that situation. At our local hospital, Edinburgh’s Royal Hospital for Sick Children (the ‘Sick Kids’) we are blessed with an amazing team who acknowledge our knowledge as parents. Who look at the test results, the monitors, the scans and the patient, but always ask us how we think Benjamin is and how we would like to move forward. Who never push us out the door when we feel he needs to stay, but do their utmost to get us home when we feel ready to go. Who may not believe in mother’s intuition, yet know how important it is to listen to mothers.
But they can’t listen if we don’t make some noise. I’m not great at speaking up when what I want to say is in disagreement with the professionals. Take Benjy’s most recent chest infection, which it’s pretty clear was caused by the 500ml of fluid he was made to take prior to an MRI scan. For a child used to no more than 100 ml per hour, I knew this would spell trouble, but I went along with it so as not to make a fuss. Sure enough, he vomited up the vile yellow liquid and some of it ended up on his lungs. Next time, I hope I’ll be more confident at speaking out when I know a treatment is not right for him.
Thankfully, Benjamin is almost ready to come home from this most recent stay. As his mother, I can only thank the team at Edinburgh Sick Kids, for saving Benjamin’s life on numerous occasions, for making his hospital stays as comfortable as they possibly can for Benjamin and for us as a family, and for listening and acting on what this mother knows. To support the Edinburgh Sick Kids Friends Foundation Christmas Appeal, you can text ‘SKFF16 £5’ to 70070. From this non-intuitive and still-learning mother, thank you.