When you find out that you have a child with a disability (OMG, I am still not used to saying that), people send you this article about comparing your experience with a unplanned trip to a foreign country. It is meant to be comforting and inspirational. Personally, I find this comparison trivial and a bit insulting. Brain, Child (thank you, Michelle, for introducing me to this life-affirming mothering magazine!) had a great piece on this. The Holland piece is hugely popular, and there is even (of course!) a blog named after it.
My. Child. Has. A. Disability. There, said it. It's still difficult. It took me my whole pregnancy to mourn my dream (a dream and an assumption that I didn't even realize I haboured) of a normal little nuclear family, everyone gathered around the table and talking about homework. It's easier now that Stella is here, and I can touch and talk to and hold her, and I find myself intensely, even fiercely, focused on helping and getting help for her. Your'e Satan but you can help her -- you're my new friend. You're an angel but can't help her -- sorry, no time for you. Right now, if I mourn the person I had hoped she would be, it is because I so want a "normal" life for her. Meaning, a job, an apartment, friends and family who appreciate and love and cherish her.
I refuse, and I mean REFUSE to be ashamed of my girl. If anything, I am more proud. Every milestone is that much more an accomplishment than it was for Francis.
This might sound woo-woo, but I knew that I was going to be Stella's mother. She visited me in a dream about a year before I got pregnant. I knew as soon as I was pregnant that something was wrong. But how to explain these feelings? Maybe it is even my destiny to be Stella's mother and advocate ....
1 comment:
Hi Deni,
I did some blog browsing today and came across your blog.
I am very glad I did, same as you I have a baby boy who where born with two genetic disorders. First is TGA (transpositioning of the greater vessels) which in english means his heart pumped back to front, he had open heart surgery a week after birth to safe his life. Then he had Tallipese in his left foot, clubfoot as it's better known. We had lots of treatment and for now he's ok apart from a heart valve leak.
He gets regular check ups. I was the same and thinking what did I do wrong. I wish you all the best with Stella and want to say 'hang in there.'
Take care, Perth, Australia.
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