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Thursday, 3 October 2013

To whom it may concern

Some days I am so tired I just want to stay in bed...but like many other mums with special needs kids, its not an option. 

My Jade is now 21 years of age and I never dreamt for one moment when I was carrying my baby that I would still be responsible for making everyday, simple decisions for her. I did not know that every day would be full of confrontation and bursts of outrageous anger. I could not have even begun to think about how I would live my life, especially the night times, in a perpetual state of fear that I will lose her to this awful syndrome. The constant nagging to make her move around, go swimming and exercise would be so easy to let slide, but if I let up even for a couple of days, she could become seriously ill. So I accept the arguments, abuse and tears and try to stop the despair she feels. 

I try to accept the difficulties it brings within the family and I try to ignore the people close to me that think I should deal with Jade harsher than I do because they simply cannot be bothered to find out the massive complexities surrounding this syndrome.

I will not apologise for taking care of my child the way I do. You try living everyday watching another young sufferer of PWS lose their battle for life, knowing it could so easily be your child next.

Advice is always welcome if alongside it, comes support and help, If you cannot do that, please refrain from making remarks and comments about which you know nothing about. 

Although I am tired most of the time as I am the sole carer for Jade, there is not a moment I wish that Jade was not born but I do wish the syndrome did not exist with all my heart and soul.

I have had some very dark days over the last few years. It has not been easy carrying on every day as if everything is ok. But...I see a light at the end of the tunnel. 

Recently, my sister moved very close to me. I have someone to talk to about my deepest fears and my anxieties. She never judges nor dismisses my worries and cries with me when I am simply at my wits end. My days are now full of laughter and more importantly life is not as scary as it used to be. 

There are many worries I cannot share with Des and my precious girls, because I am seen as the strong one. But I can share them with my sister who puts a whole new perspective on everything. 

Some days I am so tired I just want to stay in bed...........but not today as today is another day to fill with laughter.

Love you Ang xxx