Friday, March 13, 2009

I don't know....

I don't know what to title this because honestly I have a billion thoughts running through my head so figured I would write down a few of them. Stay with me here.

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.

Putting cereal on her head
so she can
Plop it back into the bowl,
something they do with bean
bags at school.


Mommy to those Special Ks said...

She is SO freaking cute! You're such a great mama :). SOOOO I wanna see pics of your new do!

Unknown said...

I can totally relate to your story...actually had a similar one getting my hair cut as well...anyway, I also get the 'I am so sorry' when people find out we have a DS daughter...which of course, there is NOTHING to be sorry about...I often have to step outside that 'comfort zone' and simply tell them there is NOTHING to be sorry about and that as a shock that it was it IS a huge blessing. Unfortunately people are naive, and with that, the speak out of turn...
However, she is beautiful...she captivates me each time I come to your blog!

Jeanette said...

I have found myself in this situation as well. We did know ahead of time and I have had people ask me why I chose to keep my daughter. REALLY?!? Yes, people can be that bold. Sigh! Your Ella is beautiful. I can't WAIT for Sydney to really feed herself!

Kristen said...

I like the way you write and share your experiences with people. I find it helpful.

Ella is a little Miss Smarty-pants. I can just picture her with the crackers stuffed in her cheeks and looking completely guilty when she was discovered. How funny!

Cammie Heflin said...

She is so beautiful! Ella is awesome! I am thrilled with Addy as well, she is 28 months old and her cognitive ability is about 12 months and I am thrilled! It just goes to show those of us with kids with DS love our kids for who they are and accept them as our children, they are all blessings!

Karly said...

I hate that question too. I always say, "no, we didn't have testing, because it wouldn't have changed our decision." That usually shuts people up. ;0

Love the Goldfish cracker story and the adorable pics.

Anonymous said...

I've been there...and you shouldn't stew...but sometimes I don't have the energy to educate when I just want to get my damn hair cut! :) People are just ignorant. Sorry for that...

All the Ella news is awesome! I'm sure you are estatic and very proud!

Kari said...

I have been in this situation countless times and I have the same answer and attitude for every single one. I always say I didn't know but even if I did it wouldn't have made any difference at all whatsoever because I wanted a baby. The baby god has chosen for me. It usually shuts them up real fast! I usually throw in how awesome he is and ask if they'd like to see his newest photo! I didn't really know he was a perfect little baby in the beginning and it did take me some time to see it but I don't choose to share that with people that simply cannot understand because they have never been there.
Now these photos are so gorgeous. you need to print them up and put a copy in your wallet for next time you run into Ignorance :)
Sorry she hacked up your hair I just hate that! It should be against the law!

Cheryl said...

Sorry the lady that cut your hair was so inconsiderate.I didn't know that my baby had Ds until she was born either.I also would not take the risk of the amnio and it wouldn't have mattered anyway,I would never harm any of my children.
I LOVE the cracker story!What a smart little girl:)
The pictures are super!

Anne and Whitney: Up, Down and All Around said...

I can't wait to see pictures of your new haircut!!! Sorry you had to sit there feeling uncomfortable and upset while she cut your hair... that is not a fun feeling! I love the story about Ella getting the goldfish crackers and eating them in her room with the door closed - she is a little smarty pants :) She is also sooooo CUTE! I can't help it when I look at pictures of her thinking - this is exactly what Whitney will look like in about 2 years - I swear they have the exact same eyes (and maybe hair???!!!)
Post some pictures of your new hair cut when you have a chance!!! I love the pics of ella eating her cereal :)

Anonymous said...

Outstanding! She shows so much control feeding herself in those photos!

Be sure to take some credit for your daughter showing the world a glorious life.

I think you are prepared for the next time the question comes.

Thanks for the book recommendation - I'm going to find a spot to show it on my blog - which you might enjoy the last couple of posts. Jeanette comments there, too.

datri said...

She's so beautiful! I hate "that" question. Actually, the one I get a lot is "didn't you get an amnio?" Gah. What's wrong with people??

RK said...

Great thoughts. Great post. Great resolution to stand up and speak out from now on. We all need to follow your lead.

Now let's see that hair! :)

Oh, and as always, Ella is TOO beautiful!

Anonymous said...

Ok, she looks like such a big girl using that spoon!! And can I just say once again...LOVE THE HAIR!!! The stylist you went to obviously needed some education (in a lot of areas), but hell you're there for a haircut not to be the guest speaker for downs syndrome!! Sometimes it should just be able to be a haircut and not a moment! But next time dont hold back, if she feels uncomfortable too bad better than it being you. But there were scissors involved so you used good discretion! Put up some pics of the new do!! Cant wait to see it!! With your hair I'm sure it looks great! Love ya's, Aunt Tami and family

Anonymous said...

I think a lot of people, such as your hair dresser, assume that life would be much easier for people if they did not have a child with special needs. But obviously "easier" doesn't always equal "better." If she had met Ella, she would have seen that for herself!

Laurie said...

I've been being more brave about correcting peoples' misconceptions, and honestly, I feel so good when I get a chance to do it. Mostly because I get to brag on Chase when I do it. I admit, I purposefully brought Chase to my OB appointment to show the dr how awesome he is.

And I love your Ella story. The crackers! My, she is a crafty one, isn't she?

Glad you are back to blogging. Missed you!

kecia said...

seriously every time I read how well Ella is doing it makes me want to move to washington to that great school. She is so stinkin cute!!
I am sorry about your converstaion with the hairdresser! It is a hard thing to no how to handle these things but I think you always do a good job.
i was having a conversation with a neighbor who just got the triple screen back and it was abnormal for down syndrome and now she is stressed out and wondering what to do and it is a weird postition for me because I know how she feels but now looking back I would tell her she will be so happy if her child ends up having ds...anyway it is all about perspective I guess.

Monica Crumley said...

She's so beautiful! And she looks like she's doing so well! THank you for you honesty. I just bought the book from Amazon on Naia, but am reading Kathryn Soper's new book right now and can't put it down. By the way, I have a blog award for you at

TUC said...

Oh, the next time Ella has her cheeks stuffed full of whale crackers, please run for the camera!

Almost everyone asks us if we knew beforehand. I often wonder why people are so interested in knowing this. One time a woman said to me, "didn't you find out in time?" I was shocked speechless.

I am beginning to think that people who only have typical children or have no children cannot fathom that a child with Ds is just as lovable and just as much of a joy to raise as any other child.

Kim said...

Such a cutie as always! Way to Go Ella!

We haven't had anyone ask us whether we knew Mattie had ds during pregnancy yet. Which we didn't and I wouldn't change. Right now we are in the double take and stare at us stage. I just want to say "yes she has Down syndrome and what would you like to know?"

Becca said...

Oh, Ella, Ella, Ella--you GO, girl, with those goldfish crackers (I mean whales)!! I wish I could've seen that--how funny!
About the hair stylist, I think all of us have had those jaw-dropping moments where we get all speechless and flabbergasted, and later on think about how we shoulda-woulda reacted if we'd been in control of our brain cells at that moment. But the moment's gone, and hopefully she'll have an opportunity in the future to learn why what she'd said was in error.

Mrs. Miller-THS LIbrarian said...

This will be the first time for me to leave a "comment" on a strangers blog. Although looking at Ella Grace makes me feel like I am looking into my Alice in the future. Your little daughter is the second cutest darling on the planet.

I knew my baby had ds at 20 weeks! It was scary, but was good info for us to prepare.

We're crazy about little Alice.