I hate this unknown 

I feel awful writing this… I hate my daughters condition.

It has robbed me of her first year, her first year is meant to be exciting and yet for a year I have been worried senseless.

 I feel robbed of her future! 

Will she just need a tablet? Probably not! 
Will she grow old and have children? Probably not! 
I can’t dream about her future like I do the others, I can’t dream about her wedding day, her first job, I can’t dream about her school life! All because of this unknown condition! 

 I feel robbed of her future! 

Yes she may live an absolutely normal life with a light adaptations but the drs and health care professionals are preparing us for the worst and so, how can I allow myself to dream of her future! 

This unknown condition has robbed me of spending time with my other kids, it has robbed them of a stress free childhood! It has robbed them of innocence of thinking the world is rainbows and butterflies as they know their sister isn’t quite right!
It has robbed them and I hate it!

It has robbed Dad and I of laughter and happiness. We love each other, we still try to laugh but in the back of our heads we are scared and there is always this huge elephant in the room which we can’t bring ourselves to talk about. We have never sat and had a conversation about what if it is bad, we can’t and we won’t and that’s not fair. 

It has robbed my daughter of her independence! 

I love my daughter with all my heart and would do anything for her but I hate her undiagnosed syndrome! 

I never thought this would happen to us, it happens to other people not us! 
Undiagnosed syndromes can happen to anyone. 

Today I am struggling to be a fighter, today all I see are dark clouds. 

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