Forward together against, the odds

When I first came home with Peter, social services had offered me only an extra ten hours’ help per week. That was less than an hour and a half each day. I had a carer who had to help me with all my needs plus help me care for a tiny, newborn premature baby.

I had all the fears and protective instincts of a new mum anyway and the situation made me feel very insecure and vulnerable. Added to this, the decision to leave Peter with me was made only five days before he was born, so we didn’t have time to employ suitable carers. I came home to a string of agency carers who, although they tried very hard, were total strangers to me and didn’t know my routine. None of them had any experience of looking after people with tetraplegia and their experience of looking after children was very limited, so I felt I had to watch absolutely everything they did. Consequently, I was getting very little sleep.

Throughout my pregnancy I felt like any other mother, just another pregnant lady going about my life. When Peter was born I had all those normal motherly instincts to look after him. He was totally dependent on me but I couldn’t do some of the things for him that he needed. I wasn’t prepared for the strength of these feelings.

Also, with the succession of different people helping, I felt immensely frustrated and jealous that they were handling my baby, changing his nappy and bathing him. I desperately, desperately wanted to do that for him. I had worked in paediatrics, was used to babies and could handle them very confidently before my accident, and there I was trying to explain, without being able to demonstrate, how to do it to people who had never held a baby before. Of course they couldn’t get it right at first. That was immensely frustrating.

Sometimes I would just lie and cry. Also, problems of my own with pressure areas and stiff joints added to my weariness and made caring for me difficult for people who had not worked with someone with a spinal injury before.

The close scrutiny of the social services investigation put me under a lot of pressure. It meant that when I came home with Peter I felt that I was being watched and that they were waiting for me to fail. This made me put pressure on myself. I tried to do every little thing for him, and what I couldn’t do had to be done on my lap. He never left my side. If he was awake, I was awake. I thought that if I was an able-bodied mum living alone I would have to do absolutely everything for him, so that’s what I planned to do. It just wore me out.

Over the next few weeks I learned to do what I could for Peter well. I learned to rest and let someone else hold him for a while so that I could get some sleep.

It wasn’t until a month after we came home and two more assessments that social services agreed to give me twenty-five hours a week for a second carer to help with looking after the baby and helping me with what I needed to do. During that month things were very difficult. I was quite poorly. The birth had taken it out of me more than I had expected.

Eventually, after all the investigating and being threatened with a judicial review, social services agreed to give me direct payments so that I was able not only to employ carers for myself but also for other household duties, night care and childcare. Social services gave me a budget and more or less told me to get on with it, which is what I wanted in the first place. They carry out police checks on my carers, scrutinise my accounts and review my finances every two or three months. That’s fine by me and means that I haven’t got agencies or social workers to deal with.

I am happy with the people I employ and they are happy with our routine. I now have five carers: two day carers who work one week on and one week off, three who do night duty and one who works twenty-five hours a week to help me as a second carer in the day.

I have found I have to keep changing the way my care is set up to adapt to Peter’s routines which change as he grows. At first he was breastfeeding very frequently. I wasn’t very well and both the day and night shifts were very busy. As Peter started to sleep more at night and less during the day, we adjusted the carers’ jobs, housework, shopping, cooking and childcare, to fit into the routine, so they are continuously changing roles.

I’m very lucky in that my carers are more like friends and family than just employees. A few weeks ago, when Peter was sleeping virtually all through the night and awake most of the day, I found I was waiting for the second carer to arrive so that I could have a shower, which is important for me.

We all got together for a meeting. I explained my problems. The carers were very helpful, My night carers suggested that they take on roles such as changing the steriliser, making up bottles, doing washing and so-on, leaving the day carers more time to help me. We also changed the hours slightly so that daycare and nightcare overlapped. This meant that I could shower first thing in the morning which was very helpful. I feel it was great that everybody got together and helped to solve the problems as a team. It gives me a secure feeling.

I was trying to do everything by the book, like feeding Peter then putting him down so that he didn’t get used to being held all the time. I tried that at first and was getting absolutely worn out, so quickly found that the best place for Peter at night was in bed with me. He was too tiny actually to sleep in the bed so I got a big pillow and he slept cuddled up to me. I had my arm round him so that I could feel him move and if there were any problems I’d know instantly. The other advantage of this arrangement was that I could move and feed him with virtually no assistance.

I think it was at this point, when he was about six weeks old, that I decided to abandon everything that everyone else thought I should be doing and just work out a way for Peter and me to go forward together. Everything seemed to settle down. Maybe I was more relaxed or perhaps Peter felt more confident cuddled up to me, but we both started sleeping better at night and therefore having better days.

Having Peter with me in my bed was my only time completely alone with him and I used to value that time a lot. After Christmas, when Peter started to settle better, he slept in a cot next to my bed. This is just one example of how we found our own way through things.

The first three months were quite difficult in other ways. My granddad died three weeks after Peter was born, so Peter’s first big outing was to Birmingham for his great granddad’s funeral. Although he never met Peter, Granddad knew that Peter had been born and he saw pictures of him. It was quite difficult to travel all that way so soon after the birth, but again my carers supported me very well.

Peter was also christened in Birmingham, just before Christmas, at the same church where I was christened. It was lovely to see all my family and friends and to introduce Peter to them.

One of the advantages of being paralysed is that I’m with Peter non-stop. There wasn’t a thing he did without me being there. The first time he smiled he was on my lap. It was a big beam. There was no mistaking that it was a smile. He showed all his gums. It was lovely. I was there when he first held something in his hand and when he started grabbing at things and putting them in his mouth.

Just after Christmas, Peter caught a cold and was taken into hospital with bronchiolitis.

I was really dreading anything like this happening because, being tetraplegic, it was quite difficult for me to move into hospital and stay with him, but we managed it because the hospital staff were brilliant. We had a room to ourselves and I had a big recliner that I slept in. There was a bed in the room which I was lifted onto for pressure relief. My carers came into hospital with us and helped look after me. This meant that I was able to stay with Peter and look after him as any other mother would. He spent most of the time cuddled up to me in the recliner and when he had treatment it all happened on my lap.

Unfortunately, it all took its toll of me and five days after Peter came out of hospital I was admitted myself with pneumonia, so we all had to revert back to the previous week’s activities.

My whole care package moved into hospital. We had a private room with a cot for Peter. My mum came to stay and helped with him. I had to stop breastfeeding initially because I had high doses of antibiotics, hydrocortisone and various other drugs, but continued after a couple of days. Again, I was well supported and we managed to muddle through.

During February we started to wean Peter. He was soon having three meals a day with milk between. Today, which is Mothers’ Day, he had his first shower. I was a bit nervous about this, but I’ve never been able bath him and thought I would just see if I could hold him on my lap in the shower. I had the carers ready in case it didn’t feel secure. We sat him on my lap and he absolutely loved it. It was all very successful and I was so proud of him because he took it all in his stride. I feel so blessed as he is such a brilliant baby and that’s what he’s been like all along really.

First published in Disability, Pregnancy & Parenthood international, Issue 26, April 1999.