The life I never expected

Way back... Way back when... Way back when I didn't know how disabled Hugh was or would be... Way back when I didn't realise how destructive his seizures were... Way back when I thought the doctors could fix things... I thought,  I thought that once we'd sorted the epilepsy everything would be better, I thought that once we'd sorted the epilepsy I'd have to struggle to come to terms with having a child that needed to go to special school.
I didn't expect to have to come to terms with having a child that would be unlikely to live past his teenage years.
I didn't expect to come to terms with having a son that hardly knew I existed.
I didn't expect that, even once the terrible times had past, the devastating consequences would remain.
Hugh's epilepsy has robbed him of a future. Hugh's epilepsy has robbed us of the child he might have been.
His really bad seizures are less often than they used to be, And for that I am grateful, But they cast a long shadow, And I ne…

I know different ...


I found this beautiful poem on another page. Thought it was lovely and wanted t share it with you. Haven't managed to find the original anywhere but apparently it's by someone called Tricia Proefrock...


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Dear Mommy, 

I have felt your tears, falling on my face. 
Someone else might think they are tears of sadness, because of what I can't do. 

I KNOW DIFFERENT.

I know those tears pour from your heart out of gratitude for me, because of what I CAN do: I can love everyone in the purest form possible. Unconditionally. I can be judged, but will never judge in return. 
I know different because I feel, in your hugs and kisses, that I'm perfect just the way I am. 


I have seen you hang your head down in shame, when we go out on adventures. 
Someone else might think you are ashamed of having a child like me. 

I KNOW DIFFERENT. 

I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won't look you in the eye, but stare at me, when they think you don't see. I know different because I've seen the many, many more times you have raised your head up high, with pride, because I'm yours. : ) 


I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid. 

I KNOW DIFFERENT.

I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life- you tell me I don't need to be typical to be amazing, I just need to be here. 


I know you have a big job, taking care of me. 
I know your body hurts, because I'm getting so big. 
I know that more than anything, you want to hear me say your name. 
And I know you worry that you aren't good enough, and that you will fail me. 

BUT I KNOW DIFFERENT MOMMY.....
I know that even on your worst days, you will always be enough for me, and I will always love you more than you know.