Monday, 5 October 2009

Somewhere over the Rainbow....



In my first blog I mentioned my only sibling Lisa.
Well my 2nd blog is dedicated to her.
We're often told that every life is special, that each person is created in Gods perfect image and has a purpose to fulfill. I believe this to be true in every case of life, even in a person such as Lisa.
Let me explain......
Lisa was born on the 25th August 1979 to a newly married young couple named Calvin & Tracy Beckham. They had the whole world at their feet. She a successful nurse, him enjoying providing for his growing family with dreams of the big things to come. The icing on the cake for this couple was their first pregnancy - slightly sooner than planned, but nonetheless, very welcomed and much anticipated!
So, when Lisa was born the colour of the average pair of jeans, suddenly things didn't seem quite so straightforward. However, the doctors gave her oxygen, and she responded well. Lisa continued to grow into a very bonny and healthy baby!
When she was 14 months old, my mum started to become concerned that Lisa wasn't developing how she should be. She didn't really speak, made no attempts to walk and generally seemed "behind" compared to other young children her age. My mum visited her GP and was told on several occasions she was "a typical first time mother, who needed to relax, as children develop and grow at their own pace!" I'm quite sure being the intelligent woman my mother is, she knew this, especially having worked on childrens wards, etc for her job. She persisted with the GP and was eventually referred to Great Ormond Street Hospital where Lisa had her tongue tie corrected and underwent some genetical testing. These results came back fine, and the diagnosis was that Lisa was just a slow developer and would perhaps have slight learning difficulties as she grew up.
I was born a year later and so with her dream fulfilled of having two little girls, family life truely began in the Beckham household. Apparently Lisa began to communicate more, started to walk and was besotted with her baby sister. I remember as a toddler and young child being the only one who could understand what Lisa was saying and would so, act as her interpretor.
It's amazing how children bond and understand eachother don't you think?
In my memory, my parents may be able to offer a different story, things started to become particularly difficult when Lisa was around 8 years old and I was 6. She would have terrible temper tantrums, and break things. She would often lash out at me and break my toys. This was heartbreaking for me as I have always taken pride in my possessions and was always very particular with my things as a child. My parents constantly asked for support and further tests to be done on Lisa, as it was obvious to them that Lisa didn't just have slight learning difficulties. This was added to because Lisa's facial appearance began to change. Her chin started to become more protrudent, and her hands and fingers seemed stubby.
Life was an emotional rollercoaster over the coming years. I was Lisa's biggest defence, but also started to resent this "thing" they called my sister. She was quite violent by now and family days out were often cut short due to her behaviour. She attended a school for children with learning difficulties as in Slough there wasnt much choice. Social services treated my parents like dirt, stating in reports that my mother was "being over the top" and that Lisa was how she was because she must come from an abusive household. It was a terrible time for my mum and dad, and the fact they got through those days and are still together is a miracle in my opinion!
Then when Lisa was 16, at her wits end, my mum demanded a meeting with Lisa's headmaster. Lisas behaviour was uncontrollable by now. She would try to jump out of moving cars, run away from school or try to escape from the house - go into the street and scream her head off. My mum told the school they needed to help our family, and they suggested Lisa have the genetic testing redone. A teacher at the school had heard of a syndrome called Smith Magenis and had immediately thought of Lisa. The tests were completed and lo and behold came back positive for Smith Magenis syndrome - a very rare mental handicap, that at that time had only around 70 sufferers worldwide.
At last, after 16 years of being called "a slow developer", my parents being called "over the top and deluded" Lisa's behaviour had a name. To think for 16 years my family had struggled through so much, my parents hadn't received any financial/emotional/physical support from anyone and now they were told "your daughter is actually mentally handicapped".
They were never given an apology, just told that when Lisa had the first lot of genetical tests done as a baby, medical science wasnt as advanced. How cold hearted "professionals" can be!
As life at home had become so difficult my parents decided it best that Lisa went to live in residential care with other handicapped teenagers. I think they knew Slough, even Berkshire didn't have much to offer Lisa, and they were also aware that their youngest daughter, who often just plodded along with things, was now becoming abit rebellious and needed their full attention.
And so 6 months after being diagnosed Lisa moved to Brighton, to a fantastic place called St.Johns College. There was, surprisingly another girl there called Janine who also had Smith Magenis. We had never seen anyone else like Lisa before in our lives, so to meet Janine was a bittersweet revelation for us.
Brighton was the making of Lisa. The team there were amazing, and she slowly calmed down, and began to blossom into a young woman. She was there for 2 years, and then moved onto another home in Gloucester, where she still is today.
She is now in "independant living", meaning she has her own bedsit flat (with live in carers), attends college one day a week to learn basic living skills, rides a horse (very well), has lots of friends, and a boyfriend too.
At times I cry for my parents, especially my mum. Now I'm a parent myself to 4 very healthy children, I can't imagine what it must of been like for her, what it still is like for her. Her perfect dream of her two girls, not living out quite how she expected it too. My mum is my very best friend. My encourager, my inspiration as a mother myself. My mum is the strongest woman I know. My parents and I often call ourselves the 3 musketeers, and we truely are!
Lisa has achieved so much more than she was ever expected too, but she will always have the mental age of perhaps, a 7 yr old child with learning difficulties. Lisa will never drive, have a full time job, have children, own a house, go and do her weekly grocery shop unattended. Lisa will never get to travel the world with just her boyfriend, Lisa will never be able to invite me over for a girlie pampering night, where we laugh at funny films and share a bottle of wine, Lisa will never be the sister I can phone and tell her just how bad my day is going and have her give me some good ole sisterly advice. Sometimes when I think of her, I just sob. I cry for all those missed opportunities, for the fact that some ignorant people out there still stare at her and make fun, for the fact that I will never get to hold her babies. Lisa will never be the sister I really could do with in my life at times....
....but you know, deep down that doesn't really matter. Lisa is Lisa. Simple really. She has in many ways been my inspiration in life, the one who I look at and think "sod the lot of you, I can do this". Lisa is loving, funny, kind, and creative. She loves drawing pictures for us all and making us gifts. Lisa loves animals and often says she would love to be a vet. Lisa is also a great aunty! My four boys adore her, and have so much compassion for other diasbled and handicapped children and adults. Nothing fazes my boys, and I thank Lisa for being that great example to them.
Lisa is made in Gods perfect image. She does have a purpose in this life. She touches the hearts of everyone she meets. She brightens the day with her random comments, and gorgeous smile.
Lisa is my sister. I am at last very proud to say that. I thank God that I have been privledged to know this amazing young woman, who recently celebrated her 30th birthday. One of Lisa favourite songs is "Somewhere over the Rainbow".... she likes it because rainbows are pretty and she likes the mystery of not knowing what really lies at the end of them. I think Lise, somewhere over the rainbow, there really is that pot of gold....but until that day my sweet, you carry on striving to be the very best you can. I love you, I admire you, and most of all I can't wait to see you and have a big hug!
God bless you always lovely girl xxx

8 comments:

  1. You just made me cry. I have a 8 year old wonderful nephew who is severely autistic and, like Lisa, will one day need to be in residential care. I hope and pray that he will have the same incredible opportunities as Lisa has had in terms of the most excellent care it appears she has had.

    I know my sister & brother-in-law have had, and still do have, their moments when they just cry...we all do...but we also know God has a plan & a purpose for this young man's life. He is an absolute joy (even in the difficult moments) and has taught me more than I can say.

    Stacey, thank you for sharing about your sister. Lots of love to you. xx

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  2. Ruth, thank you so much! It's a blessing to know that by sharing an inch of my sisters story I can reach out to friends and others in a similar situation. I'm always here if you need anyone to speak too. Your nephew is very lucky to also have such a caring family, and Im sure he will go on to achieve amazing things! Bless u lovely. Thanks again xx

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  3. Hi Stacey...I knew that your blog would be excellent..but didnt know quite how excellent..it will reach out and touch so many people ...
    I remember when you shared a little bit of your personal story at a Time Out at Sparklers and thinking then...you had so much more to tell....

    I started to weep last night at church and dont think I have stopped since....and am still weeping as I read...but sometimes tears are good.!!

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  4. Hi Stacey
    Like Irene I knew something amazing would come out of this and it has brought tears to my eyes. The more i get to know you (I know via cyberspace but still....)I admire you more and more.
    Thank you for sharing your sister with us, she sounds lovely and how blessed is she to have you too.
    Keep writing I will look forward to every one xx

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  5. love you, love your parents, love Lise and LOVE your blog. My friend, my sister. xxx

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  6. This is lovely Stacey...Lisa is obviously hugely loved as a sister and daughter. Your family sound amazing, not being understood must have been an enormous struggle for your parents. Keep going girl! lots of love, xx

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  7. I stumbled across your blog whilst googling Smith Magenis Syndrome ( A hobby of mine!!) my daughter also has SMS and was diagnosed at 12 days old, she is 3 and half now and doing really well, It was lovely to read how well Lisa is doing now! Please feel free to visit Grace’s website www.graceriddell.com we set it up to raise awareness,, I’ve had so many families affected by SMS contact me I sure it’s a lot more common than first thought!! x x x

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  8. Have just been stalking your blog, as I haven't read the older entries before. This entry is amazing Stacey, so touching. You are a sister to so many, always encouraging, supportive and giving - such a love and desire to support other women in the way a sister should. Love you sister Stacey! x

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