Is this our life now?

I can’t remember the life I envisaged before Benjamin was born … but it wasn’t this.

I can’t really remember what I imagined life would be like with a special needs child. But it wasn’t this. I imagined he’d be in a wheelchair, that we’d struggle with access to shops, attractions, and public transport. I imagined we’d be exhausted trekking backwards and forwards to appointments. I imagined he’d go to special school and I’d never have a school photo of him with his sisters. I imagined I’d always be changing nappies, washing and dressing him. I imagined he’d have seizures, maybe daily, maybe more.

I realised I’d be not just a mother but a nurse, therapist, and personal assistant. I guessed our house would be full of equipment. I knew I’d have to fight for services and beg charities for funding. But I imagined, whatever Benjamin needed, we’d be together.

Maybe we were lulled into a false sense of security by his first two years: a couple of seizures, a couple of planned admissions. This is great. We can do this. It sounds strange, but although I knew he’d be disabled, I didn’t realise he’d be sick.

But this summer, we’ve had barely a week at home together. More mad dashes to A&E than I can count. Each overnight stay turning into a week, a fortnight then more. Caitlin has spent more of her short life in hospital than out of it. Jackie spends ten hours a day in nursery, or farmed out to friends. I spend the mornings in discussions with doctors, the afternoons cancelling appointments and ringing round for the next day’s childcare, the evenings catching up on the ever-increasing laundry. My husband spends the nights in hospital, or drops in on his way to and from work. The grass grows long and the to-do list grows ever longer, as we stumble from day to day.

We all pass like lonely ships in the night. I miss Benjamin in the nights. I miss my girls during the day. I miss my husband when we don’t eat together. The girls miss their brother and each other. They miss their swimming and their ballet and their half-term fun. It’s not the life we’d planned for them. We’ve cancelled their holidays. I’ll be damned if I will cancel Christmas…

When Benjamin is home, we’re on edge, waiting for the next admission, the next seizure, the next fever, the next vomit, the next midnight battle to suction until he can breathe again. When he’s in hospital, we’re torn between wanting to get him home quickly, and not wanting to push him too fast.

We ask about the underlying cause of his sickness. Why is it that whenever he catches the smallest thing – a cold, a virus – his body just seems to shut down? Why do his guts refuse to process anything, which ultimately results in dehydration and hospital admission? No one knows. They’ve exhausted all the obvious avenues. They seem to have given up. This is just our life now.

We ask about minimising the proximal triggers for these events. Can we give prophylactic antibiotics? There’s no point, it’s viruses that cause the trouble. Prophylactic antivirals then? There’s nothing suitable. What about supporting his immune system with immunoglobulins? His immune system is working fine, they say. He has two sisters bringing home bugs all the time. What do you expect? they say. Get used to it, they say. This is your life now.

We ask if there is a way we can manage these attacks at home. All he seems to need is rest, and IV fluids, and suctioning, and physio, and paracetamol to keep the seizures at bay. If we can fit a permanent IV port can we manage him at home? It’s a lot to take on, they say. He’s a very sick boy, they say. He’s scheduled for surgery. He’s too sick for surgery. This is our life now.

So what’s the plan? we ask. There is no plan. This time, like every other time, we wait until he’s fit, we go home, and we watch and wait out the hours, days, maybe if we’re lucky even weeks, for that next mad rush to A&E, for the next fortnight in HDU, for the next tearing apart of our family. This is our life now.

There seems no point making plans for the future: booking a holiday, buying tickets for the preschool ballet show, laying out clothes for nursery the next day. Likely as not all plans will be on hold by the morning. But who does get the life they’ve planned? Who ends up with their childhood sweetheart, in their dream home, with a boy and a girl and a cat and a dog and dinner on the table at six every evening? No one I know. As the saying goes, everyone is fighting a battle we know nothing about.

I’m so, so grateful that Benjamin’s made it this far. Farther than they predicted. Farther than far too many swans who became stars this year. Without the NHS, he wouldn’t still be here; if we lived any further from the hospital, he wouldn’t be here. And without him, we wouldn’t be the people we are and the family we’ve become. Not one of us begrudges him the care he needs, the time he’s spent in hospital, the time we’ve spent apart, to be with him. We’d do it all again, and again. This is our life now.

So no, we don’t struggle for wheelchair access. We don’t run backwards and forwards to appointments. He rarely makes it to his special school. The nurses change his nappies. The doctors deal with his seizures. All we do, in the background, is fight our own battle to keep our family together. This is our life now.

Maybe, I will find the courage to push the boundaries, to step out of our comfort zone, to argue for more aggressive treatments, more at-home management, to venture further afield and to sleep longer at night. To work out what kind of help would actually help, and to ask for it, fight for it, swallow my pride and beg for it. In the meantime, we hang in there, holding on to each other through phone calls and WhatsApp, through hurried bedtime stories and snatched kisses in the car park. This is our life now.


7 thoughts on “Is this our life now?

  1. Lots of love to you all Alex, you are absolutely amazing. We wish we were closer and able to do something to help. Xx


  2. Pingback: It was the best of times, it was the worst of times | The long chain

  3. Pingback: Daring to dream | The long chain

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