Masha attended a birthday party for a classmate at Chuck E Cheese this weekend. I took Jade with us so that he could help me get her out of the tunnels if need be. The two of them had a wonderful time playing games and climbing through the tubes. Turns out, she is the one who went after him when it was time to go.
While the kids were playing and eating, I had time to chat with the mother of a little girl that Masha is friends with. The mom is from Russia, and she takes special interest in my Ukrainian princess. She asked me about Masha’s placement for next year, and about Autumn coming up. She asked Masha in Russian if she is a good girl, and without skipping a beat Masha said, “Yes!” I guess Masha does remember some of her mother tongue.
And then she asked me about my middle daughter. “Shouldn’t she be with them at school too?” It was an innocent enough question since we were discussing Masha going to 1st grade and Autumn starting Kindergarten next year. But when I tried to answer it, I choked. A wave of sorrow washed over me, drowning any coherent response. The tears slipped over my lashes, and I put my hand to my mouth. I heard myself apologizing for crying. And then I think I said something about the hospital and Kimani’s aorta, and the meningitis, and the brain bleed. “She isn’t like them,” I said. The mom put a comforting hand on my arm and told me it was ok. “People are afraid to have a child with Down syndrome,” I continued, “but I would give anything for my daughter to just be an ordinary child with Down syndrome.”
They tell you when you give birth to a baby with Down syndrome that you should take time to grieve the child you thought you were going to have. I never did, because Kimani was never anyone but herself even when she was nothing more than a zygote burrowing into the wall of my womb. I am not saying that I didn’t freak out a bit when I heard the news, or that I didn’t cry over what I feared. I did. But I did not grieve; I did not feel deep sorrow over her vis-a-vis some fantasy baby that never existed.
Oh, but now I grieve. I am heartbroken for my girl. For I know all too well what she was created to be. I have two others to remind me everyday.
Doctors and other professionals tell me that there is “a range with people like her.” There is a range, just like there is with all children, all people. But Kimani is off that chart. Even suggesting that she is just a “low functioning” version of Down syndrome tells me that they haven’t a clue. She is a little girl with an extra chromosome that altered the development of her heart and aorta but everything after that was the outcome of one medical intervention after another. She has had her true self stolen from her. For that I grieve my heart out.
And I can’t help but wonder what she would have been like.
I wish I had some words of comfort for you but I fear they’d sound like platitudes. Sometimes people just get a shitty, unfair deal – but she has a determined, devoted, loving mom and that matters. It does.
Hugs honey. Because sometimes this stuff comes up and just smacks you in the face, doesn’t it.
big love…
to be honest, sometimes I wonder that about myself. Like, what would I have been like without the car accident, without the abuse, etc.
But while I know that I am not the same as I would have been without it all, I’m ok. Sometimes in a looped and twisted way, everything can come full circle, I think, like an infinity symbol, and maybe it will be like that for Kimani.
I don’t know. But I do know the universe is full of mystery and sometimes what makes sense to grieve in one moment holds different meaning entirely in another.
xoxo
Quite simply …I love you. I cried through this post.
You are everything I hope to be in a mother for malakai. X
That is very sweet of you Erica. Malakai is lucky to have you.