I think I'll start with yesterday. I went to get my hair trimmed at the mall (first mistake.) The lady asked me how much I wanted cut off and I replied "all the dead fried ugly stuff." So she looks at my hair and says probably about an inch, OK. After washing my hair and combing it she changes her mind and says about 6 inches, whatever. When wet my hair was down to my waist. So she gets to cutting. She comments on how much hair I have. I tell her that it used to be twice as much, before I had kids. Laugh laugh. I told her that I even went to the dermatologist about my hair because I seemed to be losing WAY too much, especially in the front, and that the Dr told me it was because of stress. She asked me what had been stressing me out. So, I told her that when my daughter was born we found out that she has Down syndrome and that I had a really hard time with it in the beginning.....she interrupts (because I was going to say that everything is fine now and that I wish I would have known how good it would all be) and asks me "did you know before she was born that she has Down syndrome?" I say no. She says "oh" in that way that people do to me that I interpret as "oh poor lady, if only she would have known then she could have done something about it." That is strictly my interpretation. THEN she says to me "Does she live with you?" I say "Umm, yeah she's two." Then it hits me, the real question was is she in an institution? She says "oh, I just meant....." This is when I disengage. I could have gone off of her, exploded, but lets face it she had scissors by my head : ) I SHOULD have educated her, informed her that children with Down syndrome have huge potential, "normal" lives, and that they are not put into institutions anymore, I SHOULD have said a lot of things, but instead I just sat there while she chopped off my hair and stewed. In case anyone is wondering my hair went from being very long to barely clearing my shoulders, I've been told several times today that it looks "cute," just what every 28 year old wants to hear, ha ha.
Anyhow so in the past 24+ hours I have been thinking. I have decided that I will no longer tell people "no" when asked if I knew prenatally that Ella had Down syndrome. I did not know. I did have my triple screen come back to a 1 in 201 chance of my baby having Down syndrome, at that point I was told the only way to know for sure was to have an amnio which I immediately declined because I was told there was a 1 in 200 chance of miscarriage and abortion was not an option for me. Now after this they did some super ultrasound and said that my baby was a girl, and had NO MARKERS for Down syndrome. The doctor says "normal babies can have some markers, your baby has none, your chances are back to normal for your age (which was 25 at the time) I'd play those odds in Vegas.....your baby is a girl, enjoy the rest of your pregnancy." So, yeah I believed him and truly believed that my baby did not have Ds. However my new response to strangers is going to be "well, a blood test showed that I had a small chance of having a baby with Down syndrome but I declined to undergo further testing because that test had a small risk of miscarriage and I didn't want to risk my baby passing away." Now as a quick side note I do think the amnio is a necessary thing for a lot of people, I have some anxiety issues and this whole thing that runs through my mind like, if my baby dies it will all be my fault because I wanted to know. I would NEVER think that about other people, just something I do to myself. I am glad, in retrospect that I did not know that Ella had Down syndrome, though it would have saved a lot of heartbreak right after her birth, I think knowing prenatally would have caused myself and inutero Ella some major problems, and of course I wouldn't have been able to take my drugs : )
My second little epiphany is that I am not going to just sit and stew any longer. I need to just say what I want to say and not worry about what others think about me. I don't want to be mean, just informative, if I become a little bit bitchy with someone after they ask me if my kids in an institution so be it : )
About a month ago I checked out a book from the library that I had never heard of. It's called Choosing Naia: A Family's Journey by Mitchell Zuckoff. I have just one question....where in the hell was this book 2 and a half years ago???? It was already out there, I think it came out in 2000, why have I never heard of it??? This book is great. It's about a married couple who find out prenatally that their baby has Ds. This couple is highly educated (masters degrees I think) and they do a lot of research. The talk to doctors, parents, geneticist they go to church and pray and they debate back and forth the pros and cons of continuing this pregnancy. This book is highly informative, without feeling like you are reading a science book. Obviously because of the title they choose Naia. READ THIS BOOK!!!
OK now a couple of stories about little miss Ella Grace.
1st: A couple of days ago I was tucking Hunter into bed. I heard Ella go into her room and shut the door. I thought "YES! She's safe in there!" and went and took out my contacts. Well about 5 minutes pass and finally go in there to get her so I can start rocking her to sleep. I open the door to see Ella squatting down over a box of Whales crackers (walmart brand of goldfish) and her cheeks STUFFED with crackers. She looks up at me, very wide eyed, grabs the box and runs to the corner grunting and yelling at me as I come near her. Who knows how many crackers this kid ate. Of course I didn't really get on to her, I was too proud. She had opened the pantry, chose her crackers, carried them UP the stairs to her room and knew to shut the door so I wouldn't see her. That my friends is just smart.
Which brings me to my next thing. Ella is being re-evaluated in all her areas during therapy at school because we have been there for a year now. Her special education teacher tested her in the cognitive area and Ella scored as a 25 month old child, she is 30 months old. That is AWESOME!!!!
And last, yesterday I was here on my computer and Hunter came down to the family room and turned on the TV. He found one of his channels and then went back up to his room leaving the TV on. Ella sat down on the floor and began watching, Sponge Bob was on. One ended and another came on. The theme song was on and I hear Ella singing along, her version "bob bob, bob bob" in perfect harmony. Talk about bringing tears to the eyes!!!! She was singing along!!!
Phew, so if you made it through all of that here is your reward....
some pics of my big girl feeding herself cereal.
so she can
something they do with bean
bags at school.