Mapping Down Syndrome

I am trying to read Road Map to Holland but I can’t even get through the third paragraph of the first chapter without tearing up and putting the book down.   It’s been four years and I can’t believe it’s still so raw deep down in there somewhere.

I remember the chaos, the confusion, the nursery, the tubes, the monitors.  I remember that no one came to tell me what was wrong with my baby and that I was just left alone with a stoic nurse for hours after the cesarean.  I remember just watching the clock move, its ticking taunting me.  And how it was my husband that choked out  the news to me over the nursery telephone that my baby was broken, that “they think she has Down syndrome.”  I remember being so angry.  Not that she might have that, but that I was her mama and she needed me as much as I needed her.  “I don’t care!  I want my baby!” And I meant Pronto.

It took even more time until I could see her.  No one would allow her out of the nursery because she wasn’t holding her oxygen.  And I was allowed to go see her “as soon as I could move.”  Even now I feel the bile in my throat, remembering how cruel and unfair that sounded, how my legs could not move to get to her.  Finally I convinced the nurse I was able to go, and she helped me into the wheelchair, at that point probably ignoring her own sensibilities that I was not quite all right yet.  I vomited all along the corridors, nauseous and still drugged from the surgery.  “I’m fine!” I would say and try to propel myself even faster.

Four years later, I am still trying to find my own road map.  Do I teach her sign language or does that interfere with speech?  Do I give her the expensive vitamins or are they a sham?  How do I get her to stop grinding her teeth? We’ve talked to doctors and neurodevelopmentalists and groups on yahoo.  Every one has an opinion and yet no one has the answers, the definitive *map* if you will.  And sometimes the sheer amount of information out in internet-land is so completely overwhelming it offers me no hope but rather fodder for more mama-shaming because I feel so inept.  Like Ruby got the wrong mama.

Tonight I give her a bath and put her snug to her bed.  She’s a little ill and I wipe her nose and kiss her warm forehead.  I remember reading somewhere that she has the immune system of a 65 year old man.  I feel a bit guilty for that.  I long to remove this thing, this Down syndrome, from her, but I know if I were able to, she wouldn’t be Ruby.  I look her in the eye, make the sign, and say, “Mom”.  She smiles large, and she says it too, one of the few words she knows.  “Mom”.  I kiss her again.

Maybe, somehow,  we can write our own road map.  And the drive won’t be so bad after all.

Blessings,