30 Day Blogging Challenge Day 8: On Being The Only Disabled Person In My Family

On a snowy day in 1981, I was born at Kingston Hospital, Kingston upon Thames, UK. My mum went into labour  3 months early and gave birth to me and my sister, undiagnosed identical twins. Our home was the NICU there, and then, at 6 hours of age, we were transferred to Queen Charlotte's Maternity and Children's Hospital in the London Borough of. My parents traveled regularly every day to see us from where they lived in nearby Richmond-on- Thames. Every time they arrived at the hospital, they were told about how we were doing by the doctor, and the diagnosis and prognosis. Neither were good. We were both in a poor condition when we were born, and both on ventilators, off which it was thought we'd never come. We battled infection after infection until, nine days later, Natalie, my sister, lost her fight to live. 

When I learnt about my past, I was seven years old. Mum told me with tears in her eyes, and I could see how painful it was for her. She has always liked photos, and I remember we had lots of photo albums at home. I was shocked when Mum told me, but I remember feeling proud and unique as I was a twin. Then, she gave me a book she kept for me, and there, amongst my first lock of hair and other baby memorabilia, was a polariod photo of Natalie. This was to be my only reference for years. I had felt the need to ask why I had difficulty doing things, and couldn't do others, as well as why I had so far been in and out of hospital, doctors appointments and different therapies so often. She explained that I was born very small, and I was very ill. She said I couldn't breathe when I was born. After that talk, I was very pensive about my past.  

A few years before that, when I was two, my sister Nicola (or NIcky as she's known) was born. I don't remember anything about that time,as I was so young, but I expect it was nice for my parents to have another daughter , and for me to have a sister. 

Growing up, I quickly realised I was the only person with physical disabilities in the family, especially when I had to go to medical appointments so often, and as I had one to one help in my education. Unfortunately, my classmates did not help, and I felt really different to them. As I had so much trouble with my hydrocephalus, I missed chunks of Infant and Primary school, some of which could not be made up easily. There was always the underlying worry for us all of something going wrong with my shunt, and with me, as the symptoms are headaches and vomiting, as well as dzziness, at times it was hard to distunguish whether it was my shunt  that was causing problems, or a bug or virus. In fact, my parents cancelled a few holidays I was really looking forward to because of this fear. 

The holidays I could go on though, were amazing, we'd go to Devon or Dorset every summer, and stay in big holiday homes. There were a lot of us. We'd have barbeques in the evenings when the weather was good, and if we liked the house or area, we'd go back. In particular, we liked the area in and around Burton Bradstock in Dorset. We visited places like Weymouth too. My favourite holiday home was a house we went to that had a huge swimming pool, peacocks in the garden, and horses (which I rode). 

The house with the pool and the peacocks! 

We went to these types of places together until 1993,  when my cousins Alex and Caitlin and uncle and aunt moved to West Virginia. 

When mum was 40, we decided to have a family trip to the USA. We visited them, and my aunty Jane, uncle Rob and cousins Sarah and Meaghan who at the time lived in Higganum, Connecticut. I wasn't feeling my greatest as I had just come out of hospital from being operated on yet again for my shunt and I had to miss school. That holiday, I got heatstroke, but was well looked after. We also went to Lake Placid, and another time during the same holiday,  me, my parents and uncle Patrick went to Montreal for the day (from Maine). 

My cousins and I all got on well together, but I don't know how much  they understood about my disabilities and needs. There were times when I felt very left out though, especially during any kind of game, and also meal times. I can remember sitting at the table with the adults from quite a young age, as there was no room at the kid's table. I would get very self-concious when I would drop food or spill my drink due to my coordination! I was never one to complain, and if any of my family noticed, they certainly did not say anything, which was just as well- as I was so shy, and would have been upset. I can remember either of my parents would sit either side of me to serve my food, as I couldn't do it myself,  and to cut my food for me.  

I had an early growth spurt- around the age of 9. The GPs I saw assured my mum it was part of the fact that everything was sped up due to my extreme prematurity. I don't know what to think, and we have never had another explanation. I was the tallest in my final years of Infant school, and  one of the tallest in my class the first years of secondary school, but I felt grown-up, and more mature than some of my classmates- another reason was that I had started my period at age 9. 

We had regular family get-togethers with my mum's side of the family- my grandparents, aunty Debby and cousins Richard Michael Kara and Leah, as well as Patrick Karen, Alex and Caitlin, all lived in Buckinghamshire (Patrick and family did until they left for the States) and we usually always met either in Gerrards Cross where my grandparents lived, or Wingrave where Debby lived. Sometimes we met in Great Missenden, where Patrick and Karen lived. 

I loved playing with dolls, although I found it hard to dress them or comb their hair- there weren't many toys that were suitable for me to use or buy, so very early on, Mum took me to the Toy Library, which lent toys and games out that disabled children could use more easily: we borrowed a computer on which I wrote my first short stories . The group was based in the grounds of Wallingford Community Hospital in Oxfordshire.  

I was one of the few people with cerebral palsy that affected me physically but not intellectually.  I was the only person with hydrocephalus and a VP shunt. We all got on well, and the group organised day trips to theme parks, and playgrounds. We also went to a soft play centre. I liked this, as soft play was part of my therapy at Chailey Heritage Special School  in Sussex when I was two until almost five years old. 

The people at the Toy Library were really kind to me and always showed an interest in what I was doing in life, even up until about 2 years ago which was the last time I saw one of them as she lived in  Wallingford where I grew up. 

When we met up with my cousins from the other side of my family, we didn't do so very often. They lived in London, Borehamwood and Gloucester, and still do, except my family who lived in London moved to Australia years ago. My dad's mum lives in  New Brighton near Liverpool, and my aunty Sue lives in that area too.  She and they are supportive of me, but I saw them less often. 

I feel accepted by my family, and like they haven't made much of a big deal about my disabilities, and it is hard being the only person with disabilities in the family, but I always used my positive attitude to get by in life, and I know that is something they admire me for, although some have let me know more than others. I feel that, by being the only person with a disability in my family, I have bought a uniqueness to to the family.