Month: July 2011

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As we were preparing to land in Jo’burg I felt this sense of belonging and homecoming; after nearly two decades I stepped foot in the city in which I was born in for the first time. Chilly as the weather was, I was a Cheshire with the lightest of steps. After all this time, I was finally allowed to see where I had taken my first breaths. I was home.

As I was travelling with Alan who had a disability we were rushed through customs, which meant that we missed the queues. Giddy with excitement, I kept looking about in an attempt to feel some connection to this city. After arriving at our hotel, piling more layers on, we decided to head into Sandton. This was the area of Jo’burg that I was actually born in and hadn’t expected to see it so was unable to contain my joy as this plan was confirmed. On route to the mall we passed sights familiar to me from my childhood; townships, African people at robots (traffic lights), shops advertising biltong among other things. It was as if I had returned home.

Sandton is an exclusive area which lead to the Nelson Mandela mall being filled with boutiques and jewellery shops that one could see in most big cities worldwide so didn’t pose much fascination for us. It was so interesting to finally see the mall in which my mother walked in whilst waiting for me to be born, apparently I was stubborn and didn’t want to be born. Although I left this country as a newborn, I have this unexplainable bond with it. Some of the views were quite remarkable but not quite as breath taking as some of the sights I had seen in Scotland.

We caught the Gautrain back to our hotel, basically a little underground and over ground train that went between some of the nearby areas. Having been built for last year’s World Cup it was amazingly clean and the staff very helpful. It was an interesting trip which both illuminated some of Jo’burg’s exclusive and poverty stricken areas showing a country that had a mixture of classes with class ceilings more distinct than the British Government would have allowed. As with so many cities, it often had the exclusive areas bordering with the poorest, but it felt like home and I couldn’t have wished to be anywhere else at that moment.

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Many of you, although knowing me rather well, do not know the eldest of my two younger brothers. Callum is a seventeen year old who was diagnosed with Lennox-Gastaut Syndrome when he was four and a half years old. Before the doctors got his epilepsy stabilised, our lives were turned upside down.

Callum started off having what is known as a 'drop attack', where his body would be flung backwards and he would often hit his head off the ground. These seizures were often quite dangerous to him and led to many stitches on a single patch of his head. That patch has now been made hairless due to the significant amount of times that he ended up splitting the skin open. We went through endless nights of bad seizures, stages where Callum had to permanently wear a bicycle helmet on his head to reduce the damage and endless trips to neurologists, doctors and the hospital.

I've grown up with Callum having LGS and watched him rise and fight his syndrome when he was moved out of mainstream schools into private home schooling. At around nine years of age he was relatively stabilised, as much as would be expected, and despite the fact that he has a retarding epilepsy he was doing okay at school and life. Then we moved to America. There was no more home-schooling, he struggled in mainstream classes with 'special help' and started having a new type of seizure that was potentially fatal. Non-convulsive status epilepticus, a seizure where the person slips into an almost coma-like state. Callum would sometimes slip into these states for several hours, something that really concerned my mother. Anyway, Callum and I moved to Dundee, Scotland to live with our father where we lead a considerably more routine based life. This was what Callum needed. He managed to get into a special school for children with special needs. In his class of around six people, Callum did well. He even managed to gain some minor credits towards his standard grades (O Levels/GCSEs). Due to the fact that his epilepsy is a retarding condition his mental age has been an average of around six or so years of age. So, Callum was improving. His seizures were becoming more managed and although he had peak of challenging behaviour he was appearing to stabilise. Then everything changed.

My father passed away suddenly when Callum was nearly fourteen years old throwing him into a world of confusion and distress. Combine this event with puberty, a change of routine due to my mother and younger brother moving in with us and a new school all within the space of one year. A single one of those changes would be hard for an able bodied person to cope with at his age, but his autistic characteristics and traits of the LGS made Callum's (expected) deterioration to increase at a much faster rate than was expected.

In the past two and a half years since my father's passing, I have watched my brother increasingly become more confused, isolated and withdrawn as his challenging behaviour becomes a threat to us and those around him. As LGS is such an uncommon form of epilepsy it makes it hard for my mother to compare Callum to other children and the fact that he also exhibits traits of autism makes things even more complicated.

It's emotionally pulling to watch as Callum forgets how to carry out the day to day tasks, forgets how to play his favourite sport and just generally struggles to cope with society and life itself. As I watch how other people treat people with disabilities in such poor ways I get frustrated and angry. I must confess that part of me is glad that Callum's life expectancy is lower than that of the average British person as it is my hope that he will not have to endure the comments directed at these people form whom each day is a battle. In his own little world Callum is content and oblivious to his deterioration, much like an elderly person he is fading back into the dependent state in which everyone is born. For now though I am simply thankful that although his deterioration and ability to cope is hard to miss to the external world, Callum is relatively content to live his life in a world that fades with each passing day.

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Earlier this evening I took Alan - the guy I care for - to visit an old friend of his in Edinburgh. Like Alan, his friend, Shiela also has Cerebral Palsy but her ability to communicate and be active is not quite as limit as Alan. I had met Sheila and her partner before but this visit was different, I saw her in a new role. As a mother. She has an eighteen month old toddler and despite how Sheila has two Personal Assistants she still takes an active parenting role with her youngest child. I watched with awe as she played with him on the floor, changed his diaper and put him to sleep. If you overlooked the slight jutter to her movements, the walker by her chair and the time taken to carry out the activity at hand you would almost forget that Sheila had a physical disability. More and more as I work with people like Sheila and Alan I become more awestruck by their continued ability to strive for a 'normal' life despite their obstacles. They truly do set an example for the rest of us that (you can succeed) if you really want to!

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Last week my boyfriend and I spent the week with his family in two quaint little country towns. Still new enough to the beauty of Scotland and northern England I drove to the various areas with eyes wide and a bubble of joy bubbling within me. Although most of our journey was along the main motorways, we veered into the beautiful rural areas where I wasn't disappointed with the scenery. For those of you unfortunate souls who have not experienced the often fairytale like appearance of the country, you have not lived. It is really no surprise that Scotland and northern England are used for well respected films such as Harry Potter and television series like Dr. Who. With rolling hills whose natural creases show both their age and the changes to the landscape over the years. The deep green trees create a texture and the illusion of a hairy hill. The scattered farm animals lazily graze with the occasional one reaching over the fence for the longer, less tasted grass as they too want to try something new. Passing over the glens I spied the grassy desert that stretched further than the Roman straight roads covered. Scenery like this may bore others who crave the busy rush of the city life, but I love driving along the roads and seeing the slopes and falls of nature's base.

Our little trip was not without its challenges as we fought with the Sat Nav (TomTom Fail!) and ended up in areas that weren't that suitable for a car, especially one as low as mine! On these little detours we cursed and swore at 'Julie' - the name that Andy gave my Sat Nav - but she showed us some pretty views.

During our break we spent two weekends at Allendale town and five nights at Bankfoot, both beautifully quaint villages. In Allendale town we resided at Andy's grandfather's house whose bank sloped down into the embankment of the village's little stream. Taking Chloë - read Playing 'mummy' for a week - for a walk around the stream we burned off some energy. Strolling along the sandy path we brushed aside the overgrown vegetation and proclaimed our victory as we scampered down the little rocky path to the water's edge. As it was a beautifully sunny day we let Chloë paddle in the water in her top and underwear but very promptly she stripped naked and proclaimed that she could 'now swim like the little fishies'! We couldn't help but laugh.

Our time at Bankfoot was spent mostly outdoors when the weather was permitting. Chloë and I enjoyed collecting the freshly laid duck eggs from Andy's mom's ducks. Being a city girl the little country routines are still enjoyable to me. On the first morning that we collected the eggs, Chloë happily thanked the ducks for the eggs before finishing off with 'I go eat your egg now '. She hadn't quite realised what the egg was...

It was a lovely time away that allowed me to get to know Andy's family better and see some of the beauty that Scotland and northern England have to offer.

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This past week my boyfriend and I have spent the week with his three and a half year old daughter, Chloë. It was an interesting, although challenging week. As this was the first time I had ever met Chloë and Andy's (soon-to-be) ex-wife it obviously provoked some feelings of unease within me. Although I was well aware of Andy's past before we got together, actually seeing that side of his life made it real. Don't let my post title fool you, although taking on the maternal role for the week I have no intention of ever replacing Andy's wife's place in their daughter's life. Coming from a broken home myself I know what it's like to have an intrusion of a parent's partner invade your household and would not expect to be seen as Chloë's mother in any form. I wasn't sure how I would react to Chloë, or more importantly how she would react to me. What I didn't expect was her seemingly instant 'approval'.

Just before we were to take her home to her mother, we met up with Andy's cousin whose daughter -- Lexi -- was nine months younger than Chloë. In her cute socialising way, Chloë proudly introduced us as "my daddy and my Heather". It was times like these that the maternal side of me lit up. Kids never fail to amaze me in how quickly they accept new situations and although Andy's and my relationship is still new, I could see myself accepting Chloë as a daughter figure even if I would never expect her to see me as a maternal figure in her life.

This week was an eye opener in so many ways. As a young woman approaching the end of her teens and aware to officially join the 'adult' world certain feelings are arising so it's natural I have considered a family in the future. Frequently I have been told of the maternal nature I express towards my friends and family but more often surprise them when I confess I am not entirely sure if I see children in my future. Somehow the white picket fence image doesn't fit with what I want from life but when it comes to children I get mixed feelings. This past week I felt like I was Chloë's main carer and spent many hours supervising, negotiating and attending to her which was both tiring as frustrating. With my brothers grown up now I had forgotten how tiring young children were - especially when they're on the brink of discovering some independence. Most meal times were a negotiation, dressing had to be a game and don't even get me started on bath time. The first time Andy and I tried to get her to shower we simply mentioned the word and she screamed the place down for the next ten minutes. After making us feel like we were torturing her, once we had finished she proudly claimed 'Chloë all cleaned now'. Sigh, how could we be mad at that? Chloë definitely taught me a lot about myself this week and made me respect my mother more!

Despite how much I hated the early starts, the tears and the patience needed to get things done; Chloë was the sweetest little child. Sociable with everybody and very affectionate. She showed me that I could cope being a mother despite the challenges of raising a child entails. Perhaps in the future I may be more willing to fully consider the idea of starting a family but for now though I am quite content on handing the child back to their parents and heading back to my less complicated life.