I suppose I was a bit prideful. I thought I was untouched. There were those parents who grieved when the diagnosis came, and those, who like me, found it to be more like an interesting insight into who the child is. I didn't grieve a child I never had. I met Mariana in that NICU and felt settled and at peace. Meeting her was like coming home. "Ah, I'm here, you are here and we can finally just be together." But perhaps that was the Denial phase.
Denial is based in ignorance, I think. "I don't have cancer, I feel great!" It's easy to deny that which has yet to be proven to us. And so Scott and I felt wonderful. Our girl had very few physiological impairments. She was, for all the doctors could tell, a healthy baby girl. There was no endless time in the NICU, no emergency heart surgeries, no deafness or digestive problems. Our children loved the new baby. We were whole.
I just didn't know.
Our community is amazing. Scott and I are open to questions and not put off by the ignorance surrounding Down syndrome. (Mostly this is due to the ignorance we lived with until our girl changed things for us.) Besides, ignorance isn't hateful or shameful, though it can lead to making some hurtful comments. Still, I am not easily hurt, and since I'm a professional foot-eater, I'm not overly frustrated.
And I didn't really want to know.
Initially I didn't do much research, which is shocking to anyone who knows me. I'm an info junky and pro-web surfer. But I just felt this revulsion to plopping Mae into this box of DS, which I think is a temptation for a person like me who craves order and routine. "Here is Mariana's definition, now I can deal with her." I can so see myself falling into that trap, and as a mother, I'm disgusted by that. Mariana is herself, not a diagnosis. I say it as much for myself as anyone else.
But the world is cruel sometimes.
I did begin to read, and then, like the glutton I tend to be, I couldn't stop. I found the information about children being aborted for the unspeakable crime of having an extra chromosome. I couldn't stop reading the opinions of the intellectuals who espoused these ideas. And then I came upon a blog where a woman offhandedly mentioned that of course she would abort her baby if it had DS - and please, no comments from parents of these kids exclaiming, "My child is the light of my life, blah-blah-blah" It hurt so badly to read these things, to know that there were couple frightened into snuffing out the existence of an amazing life. The weight of my sadness felt like it would crush me if I let it.
Then I became angry.
I was angry there exists such idiocy. I am angry people are complacent in their own ignorance. You don't want to hear from actual people who live this life? That doesn't make you smarter than me, it makes you inexperienced, and therefor, NOT a good judge. I'm furious that there are individuals who really believe that they are so wise and brilliant because they have a high IQ, years of schooling and can avoid making decisions based on silly things like emotions and "love" and actual real-life experience. As if my parental intuition, because it cannot be quantified, is worthless. As if children can be raised by a formula provided they have the right genetic make-up. I get so angry I want to find these people and scream, "Who are you to ask me to defend my daughter's existence?"
And I'm angry about the flippant. I went to a work out where the trainer was talking about his father attending one of his events. "He's always yelling my name and clapping for me. He's such a retard." I know
I've blogged that I don't want to ban this word. I don't. But I hate the usage of it as a derogatory noun. This is the same guy who, after I told him I missed a work out because I was up all night with sick kids, said, "You have 5? Huh, I couldn't have any because I like sleep too much." Clearly he's immature, but his flippancy made me sick. I said nothing. The lack of sleep had made me mean inside, so I said nothing to avoid saying the worst kinds of things. I stayed angry for too long.
Love for Mariana demanded I not be satisfied in my own anger.
I'm not through my grief, but I understand it more. I do not grieve Mariana's diagnosis. I grieve that the world is full of such a hardness, that even those who espouse a doctrine of love and peace believe they can exclude the handicapped. They miss so much when they close their eyes to the value of these lives.
This is what is missed when they close their ears to the families who love their Down syndrome children:
I find joy every single day in my life. There are the mornings in bed with the kids between us. There is every first we'd thought we wouldn't see for a long time. There are the times in the kitchen when I am stepping on kids and the dog and I'm beginning to lose my patience when one of them says, "This is the best day ever!" There is our 3 year old boy who barges in our room every morning as asks to hold Mariana. There is the moment when Scott walks through the door just as I start to think the whining will drive me crazy. There are the nights where we actually sleep 6 whole hours. There are the frustrations that turn to victories and the sadness that gets licked off our faces by the dog. There are tears that turn into warm baths and snuggles. There are nights of sleeplessness that turn into victorious days where I keep my cool. For every moment of fear, desperation or frustration, there is a mini resurrection moment when it is all made worthwhile. That is life, with or without a Down syndrome kid. Mariana gives us the eyes to see it. I grieve for the blind.
