Wednesday, 16 October 2013

When a chromosome makes you question His perfect image!

I've spoken before of my older sister Lisa.
Lisa is 34 years of age, lives in a lovely area of Gloucestershire, cares for and rides a horse weekly, attends college and has her own bedsit flat.
Lisa is also severely mentally handicapped with a syndrome called Smith Magenis - a syndrome caused by a defect in chromosome 17.

When Lisa was first diagnosed with Smith Magenis, it was a very rare syndrome, with approximately 70 known sufferers worldwide. I know that over the last 18 years it has become more well known and research has advanced into it.

Needless to say as a family its been a roller coaster journey learning how to support, care for and help Lisa. We love her unconditionally-and have always pulled together to shower her with that love...but at times it's really hard not having the sister relationship I'd so love.

Lisa has been struggling lately with her emotions and behaviour. She has lost two close friends who she has shared life with for many years, my family unit have moved house-which unsettled her-until we got her home for the weekend and she was able to see the place for herself, my mums on-going health problems scare her
and I think she just realises her life will never be similar to mine-which I understand must feel so hard.

Today I received the results from my parents of a physological assessment Lisa had a week ago due to her behaviour. The results have upset me but also helped us to understand her even more. Basically Lisa has an emotional age of a four year old, the capabilities, insight and understanding of a seven year old, but the desires and interests (music, fashion, the odd malibu) of a late teen.

I know we need time to process this news and then man up, and just continue alongside Lise as we always have...but I have this nagging voice in me...the same one I shared with a friend over a cuppa last week about being made in Gods perfect image...about heaven being full of perfects-no hurt-no illness-no handicaps..???
I think, hand on heart, us mere humans, have a very very long way to go before we can even comprehend what Gods perfect image is. Today I say honestly and humbly...I don't know what that image looks like-society would tell you, nothing about my sister is perfect, nothing about her existence is fair or nice or to be celebrated...Gods word would tell you she is a princess, a daughter of the One true living God who knew her before she was even conceived...that He knew her then, and knows her now!
Stacey would tell you...I'm grieving today, because the one relationship I've always wanted in my life, now feels even further from being how I would want it to be. I've had facts...and facts can hurt.

I love my sister so so much. I'm so proud of her, and I believe she is possibly one of the kindest, funniest and sweet natured people I could want to have in my life.
I refuse to let today's news keep me crushed in spirit. I trust my God...I trust He knows best and I trust that He will ensure Lisa's life isn't in vain...isn't a waste...and this made in His perfect image young lady would understand through it all, her worth, her potential and her value - because she is all three to us <3 p="">

1 comment:

  1. This is beautiful. Thank you for sharing.


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