‘there are times I could just run out the door’

As told to Joan McFadden Susan Love, a nurse, lives in Paisley with her husband Willie and 19-year-old son Owen, who has cerebral palsy and hydrocephalus. Here, she tells Owen about the love – and the guilt – she feels for him

You’ve always been a bit of a surprise to me, right from the moment I found out I was 26 weeks pregnant at the age of 19.

My first reaction was ‘My mum is going to kill me’ and she wasn’t jumping for joy when I told her. I was in a steady relationship and training to be a nurse but everyone in my class had been warned that if anything stopped us sitting exams we’d have to start from the beginning. There had been an outbreak of sickness in my ward so when I started feeling ill my GP thought I’d picked it up from my patients. I was still suffering from terrible tiredness two weeks later so I went back and saw a locum. I quite like a bit of drama but I wasn’t prepared in the slightest when the nurse came bounding through the door and said: ‘You’re pregnant!’

My mum and dad just didn’t know what to say and their reaction was simply ‘Whoa! What does she do now?’ After the first shock they were very supportive, though not happy. My nana and papa were brilliant and said that there was no shame in me having a baby and to hold my head up high. Your dad was like me – right, we’re having a baby, let’s get on with it – but we never really got a chance to think about it all as two weeks later I was diagnosed with pre-eclampsia and high blood pressure so in the space of six weeks I went from being a not very maternal person to finding out I was pregnant to giving birth at 32 weeks.

You were a wee scrawny thing at 4lbs and we thought we were going to lose you as you had two respiratory arrests at birth but you hung on grimly. We knew there was something wrong straight away, but there’s always that glimmer of hope that your baby will be the same as everyone else’s. We should have maybe thought more from the scans when they kept saying “baby has a big head”, but we thought nothing much of it as your dad’s a big guy. The first few months after your birth are still a bit of a blur. You spent most of your early life in an incubator on breathing machines being tube fed. Initially the doctors didn’t hold out much hope for you and kept telling us you were poorly, but you proved them wrong and fought all the way. They told us you had a condition called hydrocephalus, which we’d never heard of but is a build-up of fluid on the brain which puts pressure on it and can cause it to be damaged. We knew from looking at you that your head was larger than it should have been, maybe we shouldn’t have but we used to say your head was like those in the Tefal advert – sorry Owen but this was probably our way of coping. We all loved you to bits and my mum and dad were fantastic. Dad heard about shunts helping so he asked your surgeon why you weren’t getting one and things really changed after you had one fitted to drain the excess fluid from your brain, and I can proudly say what a handsome young man you have become.

It was all a real emotional rollercoaster for me, but when you’re young and naive you just plod on and go with the flow. Having a child with a disability really makes you grow up but we didn’t have any idea then of all the problems waiting for you. You were nearly one when the cerebral palsy bombshell was dropped on us by another paediatrician and were totally taken aback as no-one had mentioned it before. She was really supportive and positive unlike another doctor who said ‘If I were you I’d just wrap him up and take him home. There’s not much hope there.’ Going to the Early Education Unit at Corseford School when you were 10 months old changed everything. The paediatrician there was so proactive and determined that they would provide everything you needed, with occupational therapy, physio and working on your balance, all accompanied by singing and nursery rhymes with the speech-and- language therapist. The realisation of what life would be like for you and with you sunk in very slowly. You were all I knew so I had no other children to compare you to and no milestones in my mind that I expected you to reach, though I used to get annoyed at hearing other mothers moan about their children messing up the house or pulling out everything in the cupboards. I’d love to come home one day to find that you’d wrecked the house or that you could get out of your wheelchair by yourself and cause havoc.

You were four when you said ‘Mum’ for the first time. I knew you could understand everything around you and any communication is fantastic, though you can get frustrated if you can’t find the words. You were six when I split up with your dad and just nine when I met Willie who made me realise that I don’t have to do everything by myself. When we got married five years ago I think you were as happy as we were. I’ve always got to be geared up for battle because I would fight Goliath for you so it was hard to let my barriers down. Willie took on both of us and what made me realise that was the way his parents made you their wee grandson straightaway. The hardest time was when you were finishing school and we were trying to organise a day-centre place for you as you reached 18. Getting the right service at that age is a nightmare and we eventually had to take Renfrewshire Council to a tribunal to secure your care. It’s so exhausting, fighting, inquiring, begging for help and there were times I got sick of my own voice, but when you have a child with a disability there’s a conspiracy of silence – we don’t want to share what we know with each other in case someone else gets a service or funding and your child loses out as a result.

There’s also an expectation that you’re some kind of martyr though I have always said you would never rule our lives but just be part of the family. You can’t entertain yourself in any way so one of us has to be engaged with you at all times and that can be so tiring. One social worker asked me why I was working – until you were 16, I worked 37.5 hours, now 30 hours a week – saying I could get all sorts of benefits if all I did was look after you, as if I didn’t matter at all. I’m really wary of social workers – I need to ask them for help but I’m scared to say I’m not coping in case they try to take you away.

I know all mums occasionally lose it and snap at their children but sometimes I feel so guilty about it, especially in the mornings. I’m up at 6.15 to get myself ready and then start to get you going at 6.45, using the hoist to get you from your bed to the chair and then get you washed, dressed and fed. Dealing with double incontinence is no fun for either of us, is it?

There are times I could just run out of the door and I hate it if I snap at you but you deliberately wind me up, like all teenagers do. I know I have to learn to take a step back as you get older and it’s great that you have so many activities organised but there are times I feel like a taxi driver. Most mums say that but most children grow up to fend for themselves and that’s never going to happen with you. I would love to see you settled in your own flat with friends, though you would need 24-hour care. You’re like the nursery rhyme – when you’re good you’re very, very good and when you’re bad you’re horrible but that never changes how much I love you, no matter how tired I get. I wish I was a howler, shouting about how hard it is to cope because then we would get more help but I’m not built like that – I just put on a brave face and get on with it.

We do have a good laugh – remember that time a family walked past us and you said ‘Check the state of that’ about one of their teenagers? It was fair comment but I was stunned. They all turned round and I could see them thinking: ‘That poor boy in the wheelchair couldn’t have said that. That shocking mother!’ You and Willie couldn’t stop laughing so thanks for that unexpected moment of mortification.

I just wish I could have more time and support to enjoy you and not feel guilty when I can’t give you everything you need. I know people say I shouldn’t want to change you but if I could get rid of your disabilities, I’d do it in a flash for all our sakes.