Sarah Lucas is the mother of three boys – her eldest is severely disabled with cerebral palsy. As her children grew older she began to think about what she would do once they were all at school. Having rejected the idea of returning to the workplace due to the lack of out-of-school care for her oldest son, she decided to become a foster carer, with a particular interest in pre-adoption placements for children with disabilities. Following a casual remark at a fostering review about fostering a child with Down’s syndrome, a tiny, floppy and very poorly baby came into our lives. Jenny had been rejected within hours of her birth because she had Down syndrome, and many initial problems caused by a serious congenital heart condition, Fallots’ tetralogy, which would mean major surgery in early childhood. As we talked with her paediatrician, we realised that this was a very serious condition and that without surgery Jenny would die. The hoped-for plan was that Jenny would grow and have surgery when she was about two. As we knew, she was going to be placed for adoption. We thought that her new family would be the one to be faced with that enormous hurdle. In the meantime, she was described by the paediatrician as ‘the hardest-to-feed Down’s baby he had ever seen’, so for several months feeding Jenny became the focus of my waking hours. Bottles were abandoned (the effort of sucking was just too much) and hours were spent giving tiny amounts of milk from a teaspoon, and coaxing this scrap of a baby to take a hold on life. Gradually Jenny began to emerge – her first wide smile of recognition, her giggle at the antics of her foster brothers, her first taste of chocolate pudding (a life-long love affair!) and her oh-so-slow physical progress.

Just as caring for Jenny became a little more straightforward, her heart condition worsened, and “blue do’s” became a regular feature of her life. Most mornings would bring a time when she was obviously in pain and distress, when there seemed to be nothing I could do other than to hold her and love her; and pray that it would soon pass. Naturally, this affected her well-being, she stopped making even the tiniest of weight gains and it became clear that risky surgery was needed sooner than anticipated.

Despite these problems – and maybe in part because of them – my three boys began to ask, ‘Why can’t we keep Jenny?’ The idea was beginning to take root and grow in our minds; an idea that gave rise to much discussion and heart-searching as well as some arguments and tears. The more we thought, the more possible the idea became. And eventually we were able to see through the barriers other people were putting in our way and clarify how we truly felt. We were all well used to caring for a child with a disability and enjoyed the challenges, and we were realistic about the implications of having a child with special needs for life. But as Jenny approached her first birthday and was admitted to hospital for surgery, adoption seemed unimportant compared to what lay ahead. In the hours of surgery, which proved to be even more complex and risky than had been anticipated, and the difficult days afterwards when she clung to life by the most slender of threads, it became clear that Jenny was our little girl and whatever her problems, we wanted to share them with her. After a week in intensive care, Jenny was able to come off the ventilator. The joy of the moment when she was placed in my arms for the first time after surgery will stay with me forever: here was Jenny – my daughter.

Many years have passed. Jenny has grown into a feisty, funny, food-loving young woman. She has had many more operations, including a new pulmonary valve and several pacemakers, and has knocked on heaven’s door on a number of occasions (but heaven must have decided they weren’t quite ready for her yet!). She lives at home with us, but has a comprehensive package of support which allows her to be independent, while still “plugged in” to the security of home. With her supporters, she does several  hours a week of voluntary work, dances, swims, cooks, goes out for meals, indulges in retail therapy, and much, much more. Being her parents is a privilege and a pleasure, even though we do not know how many more years of life are ahead. I am so thankful that Jenny came into our lives!