Hi, my name is Carolyn, and I am Cara's mum. Cara was born by planned caesarean section. She was small and had some issues feeding initially, but she soon learned to bottle feed & was able to go home. She was such a good, content baby to begin with, but at 2 months old, Cara stopped gaining weight and she was referred to a paediatrician. The paediatrician noticed that she had poor head control. We thought this was because she was so small, but over the coming weeks things changed dramatically.
Cara began to have prolonged episodes of screaming and back arching, which we were told was colic. But this progressed and Cara appeared to be having short seizures, lasting for seconds. A week later, she went on to have 26 seizures back to back, and was admitted to Alder Hey Children's Hospital. We stayed there for 3 weeks as she underwent a number of different tests. Little did we know we were about to receive the devastation news that Cara had a condition called Lissencephaly.
Each day we received sad and devastating news. Only waiting to hear something positive, but nothing came. We found out that Cara would have significant development delays. She would never be able to walk or talk and she would have epilepsy that would develop into seizures that would become difficult to control. Overall, Cara would have a poor prognosis.
We were devastated and heart broken. How could this be real? It felt like a bad dream. This is something you read about, but never dream it is going to happen to you! After many tears and a lot of upset, we realised that this would not help Cara and her needs. We needed to be strong to get through this.
Whilst this has been a life changing experience, we have tried to keep some aspects of life as 'normal' as possible. Life is busy and fast paced, but there are times when I sit and think about things. It can be upsetting, and for a brief moment I don't think I have the strength and courage needed for this life. But then I think of Cara. She is so special. She is the most beautiful, pleasant little girl. At times she can be 'moody', because of what she is going through, but it is great to see that she has her own little personality. All she needs is to be loved and cared for, she doesn't ask for much else.
Cara's needs are 24 hours a day. From meeting her personal needs, repositioning her, meeting her medication & feeding regimes and therapy needs, it is a busy day. When she is unwell she gets very distressed, especially as she can't communicate verbally. We can be up most of the night trying to comfort her and make sure she is comfortable.
I work as a nurse, and Cara's dad, John, works as an engineer. We have remained at work to allow us to have a bit of normality in our lives and to just have our own time to be who we are and take our mind off things for a short time. This enables us to commit to her needs with a fresh mind. We also have another daughter, Olivia, who is a year older than Cara. It is difficult, and some days it is hard to balance things and keep up. But we are very lucky to have some great family and friends.
When we heard about Zoë's Place through our health visitor, we decided to take a look around. What an amazing place! We really are grateful for the help and support we get from them. To know there is a place we can leave Cara where she is safe and well cared for by experienced staff is incredible. We never worry about Cara during her stay there. We don't have anyone else that we could leave Cara with overnight, but because of Zoë's Place we are able to get respite for a weekend. During which we can have some normality and a chance to recharge our batteries to enable us to have the energy to give Cara all the care and attention she needs. We were even able to take our other daughter on holiday abroad recently, which we didn't think would ever be possible again. All whilst Cara had her own little holiday with the amazing staff at Zoë's Place doing the things she likes. She loves playing in the light sensory room, it really is an amazing place. We recently got married and 2 of the nurses came along to the wedding to care for Cara while we were able to enjoy our day without the need to worry about her. Following which she went to stay at Zoë's Place for 2 nights. We will be forever grateful and cannot thank them enough as our day would not have been the same without them.
We would be absolutely lost, and exhausted without the help we get from Zoë's Place. We cannot thank them enough for the help and support they give to Cara, and to us as a family. They are angels.
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