Hi, my name is Abbie. I am 25 years old and live in London. Unlike a lot of the stories featured here to date, this isn’t my story… instead it is a story about my younger brother Luke and my experience of growing up with him!
I was 3 years old when Luke was born. Having grown up as an only child for a few years, my mum tells me I wasn’t hugely excited about his arrival! My earliest memories of Luke are quite vague as I was still young when he was born. My mum tells me that I loved him as a baby, always wanted to feed him, and never acknowledged the birthmark which he had on his ear, scalp, and left side of his face.
When I was around 5 years old, Luke had his biggest operation, which was his tissue expansion. The constant operations he was taken to and the constant attention my doting parents gave him was the hardest part about growing up with Luke. As an adult, I now understand the need for this dedication. However, my earliest memories involve spending a lot of time with my Grandad, whom I grew extremely close to, whilst my parents spent their time back and forth to Liverpool and London for Luke’s treatments. Having had all my parent’s attention prior, to now having few interactions when they weren’t caring for Luke, I remember finding this tough. Another factor I found extremely difficult was seeing the aftermath of Luke’s countless laser treatments. As a sibling, it is distressing to see them in pain and although it was helping Luke remove his birthmark, it always looked terribly sore.
Growing up alongside Luke later in life was also sometimes difficult. We grew up at a time where Caring Matters Now as a charity was fairly new, there was limited knowledge of CMN and a lack of resources to help educate people. I remember as a child going to the shops with my Mum and Luke, and countless times people would stare and point and ask my Mum what was wrong with him. As a young child I found this heart breaking. Strangers would approach us in public places and I could see it made my mum feel extremely uncomfortable explaining. During our school years, I also remember having to explain to people why he looked different and what condition he had. I was protective over him, always ready incase somebody made a nasty remark. Growing up, although I didn’t have the birthmark, I also took on some of the burden of it. We grew up at a time where my parents felt like the only people in the world with a child with this condition and having a visible difference like CMN wasn’t accepted.
I think it is important for siblings to also have support because it is just as much their journey as it is their siblings. Although they don’t have CMN, I think it is hugely important to have the knowledge and be able to educate people that they are not alone! It can be frustrating whenever people cannot see past a visible difference to see your sibling as the wonderful person they are! Naturally we live in a world where people will be curious and it is our job to build awareness and inform the people around us!
I always found the Support Days, which Caring Matters Now run, extremely rewarding! Each time, it was such an eye-opening experience attending and seeing other children like Luke! As an adult, both Caring Matters Now and Luke have inspired me. Luke’s confidence and hardworking attitude throughout life has always been inspirational. Regardless of being my younger brother, I have always looked up-to his resilience and seen him as a role model. He has huge determination and I have always been very proud with what he has achieved despite the challenges he faced early in life. Caring Matters Now has also shaped me as an adult and has made me more accepting of people with a visible difference, and to accept people for who they are. Having grown up regularly attending Support Days, and as an adult I donate monthly to the charity, it was imperative that I signed up for the Liverpool-London trek. Caring Matters Now has been a huge part of both my families’ and my life growing up and the support and knowledge they have given us over the years is incredible!
Luckily, thanks to the amazing work of Caring Matters Now, there is so much more knowledge about CMN compared to our childhood. I also believe we live in much more of an accepting society and there is an increased awareness of visible differences, however it is still crucial to continue building awareness and supporting others!
