Bonnie was born with severe brain damage and her mum was told to take her baby home and keep her happy. They didn’t expect her to live longer than a month. That was 30 years ago. This is Bonnie's Story.
Bonnie was born with such severe brain damage that her mum Bev was told by medics to take her baby home and keep her happy. They didn’t expect her to live longer than a month.
Bev had caught mumps in the first trimester of her pregnancy and was very poorly. As a result Bonnie incurred brain damage at this very early stage in her life. With seizures throughout the pregnancy and at birth, together with other complications, the outlook for Bev’s precious baby was very poor.
That was 30 years ago and throughout those years Bev has been tirelessly devoted to Bonnie’s care. Naomi House & Jacksplace has been there to support them and we will join Bonnie and Bev in celebrating her 30th birthday this year.
Bev shared their experience with us:
"We knew right from the start that things weren’t right. Bonnie was having constant seizures and was continually ‘sparking’, so a multitude of tests were carried out on her. As a result we were told that she had a complete failure of neuronal migration, meaning her brain would be unable to make pathways and her development would be severely affected.
"In the early days, Bonnie was completely deaf and blind. She didn’t respond to sound at all and I had to be very careful when I picked her up. I had to let her feel my body heat, then outline her body, and then pick her up gently, with no sudden movements.
Although Bonnie’s eyes and ears are healthy, the signals aren’t being received by her brain. It’s like putting a DVD in the player, you press play but you haven’t got the cable connected to your TV. The signals are being sent but you wouldn’t get a picture or sound.
"I have spent the last 30 years working to try and get Bonnie’s vision and hearing to mature, and trying to keep her skeletal system in the best possible shape. We’ve spent hours doing physio, sensory and cognitive work and it has paid off. Her development has been very slow, but we work on the neuroplasticity of the brain, so if an area of the brain isn’t working, we try and get another to take over.
"30 years ago when Bonnie was born, Naomi House wasn’t built, and getting respite would have meant her going into hospital. Bonnie had spent the first six years of her life in and out of hospital, so I didn’t want to her to go there when she was well. But even when Naomi House was built, I wasn’t ready. Bonnie had survived for the first few months, and then the first few years, so I clung on to hope and didn’t want to believe what the doctors had said about how long Bonnie might live. Children’s hospices weren’t so talked about in those days and I thought it meant that if I let Bonnie go there, then she was going to die.
"Bonnie was 12 years old when she first started visiting Naomi House. Four of my close friends died in a short space of time and the reality of having a child with limited life expectancy hit home. That was when our consultant suggested that we visit Naomi House.
We haven’t looked back, they have been fantastic. The first time I walked into Naomi House it was so welcoming and inviting and I felt so relaxed. I knew it was somewhere that we could come and be happy. You realise it is there for the good days, as well as for the sad days.
"I've always trusted the care team to look after Bonnie, but in the early days I would want to be involved and found it hard to switch off. I think I felt guilty in some ways, because I felt like other people were doing what I should be doing. But the staff have always been fabulous, really understanding and caring.
"For the parents, it’s the one place you can go where there are other parents who understand how you feel. There is a real camaraderie. You don’t have to explain and nobody asks awkward questions and the support we get from the staff is completely invaluable.
Bonnie has hundreds of seizures a day and night and is in the highest risk factor for SUDEP (sudden unexpected death in epilepsy). Naomi House & Jacksplace have been an absolute lifeline. The moment I put my foot across the door, I feel I discharge my responsibility and know that Bonnie would be looked after.
"I am constantly tired, even though your body does get used to it. Giving round the clock care, 24 hours a day, becomes a way of life. But when I walked into Naomi House and now Jacksplace, how tired I am hits me like a ton of bricks. If I go home while Bonnie is staying, all I do is catch up on all the things I haven’t had time to do, so I’ve taken to staying in a hotel nearby. It’s lovely, because you can’t do anything there, so it makes me rest.
"Bonnie was one of the first people to stay at Jacksplace, the hospice for young adults, when it opened in 2010 when she was 18. Naomi House and Jacksplace are on the same site and Bonnie’s transition from Naomi House to Jacksplace ran very smoothly. A lot of the staff already knew Bonnie and I knew and trusted them. I struggled with it at first because Bonnie was going into an adult environment, when developmentally she was still a baby. However, I couldn’t help but fall in love with Jacksplace once I went in there and saw how amazing the facilities were. I knew the staff would still give her what she needed and what was appropriate for her.
"Other than Jacksplace, I provide all of Bonnie's care, physio, sensory, cognitive and social stimulus to try and give her the best quality of life. Bonnie's whole brain is affected so it has impacted every area of her development. Bonnie’s communication is very limited but I can tell how she is feeling by how she looks and by her breathing. It took me a long time to get to know her, particularly in the early years when she didn’t respond at all, and that was hard. I felt like she was in one long endless tunnel and we would get up in the morning and go to bed at night and it was just a void. She does have a good quality of life, even though it is limited. If I've got her to laugh in the day because we’ve done something funny, we’ve had a good day.
"I like to think we have a nice relationship but it is hard to say, because you don’t get smiles from Bonnie, you don’t get her reaching up to hug you. I would love just to get a little spark when she sees me, or a smile when she hears my voice. It will come one day, I am sure. But I think she doesn’t know the importance of it, so she is not choosing not to smile at me, she just doesn’t realise that it is something that would me happy.
Bonnie is very limited in what she can do. She knows my voice, but she doesn’t know me facially at all. But the one thing she does have, is that she is content and she is happy.
"Someone from the activities team at Naomi House & Jacksplace comes to our house every couple of weeks which has been wonderful. It is two hours a fortnight where I don’t have to think about what Bonnie is going to do next and what activities we are going to do. It is company for me, and Bonnie has a nice time creating something amazing. They bring everything with them and we get to keep what she makes. She really enjoys that.
"I’ve had to call on Naomi House & Jacksplace for additional help when we had a family emergency and also when I was very poorly after major surgery. The team were absolutely brilliant. They took Bonnie in and it was such a great help to know that she was being looked after and I didn’t have to worry.
"Given Bonnie’s prognosis as a baby and all that she went through; pneumonia at 9 weeks, life threatening asthma attacks, seizures that just went on and on, I’m just so grateful to have her. I’ve only ever wanted her to reach her potential. It’s not always easy, because it is exhausting. I am getting older, as we all are, but my plan is that I look after Bonnie until the very end, the day I die, hopefully.
Naomi House & Jacksplace have supported us for more than 18 years. They have given me and other parents a chance to have that break, confident in the knowledge that our youngsters are going to be looked after and valued. It can be very difficult in mainstream society for youngsters with profound disabilities to have any worth, but every single child and person who goes to Naomi House & Jacksplace is seen as an individual and valued for who they are.