who she is.

the other day my big came to me to show me her hands.
'mama, look.  i have lines on my hands.'
'i know.  see, mama does too.  how many lines do you see?'
'one. two. three.  i have three lines on my hands.'
'so does mama.  let me show you something about shilo though.  see her hand.  she only has one line.  most people with down syndrome only have one line on their hand.'

big is mostly unaware of shilo's differences. she knows she has down syndrome.  she is completely unaware of what that means, and how that affects her sister. i like this about her.  it helps even out nights like tonight where my heart swings between aching and anger.
i know that we live in a world that has a hard time knowing what to do with people like my little.  they look at her, and immediately her labels jump out to them.  and i get it.  when big was first diagnosed, i noticed every cafe au lait spot, every new armpit freckle, everything.  that's all i could see.  and the first few weeks with little, her down syndrome really stood out to me.  i don't necessarily expect strangers to be able to move beyond those labels easily.
there are other people though.  people who see her somewhat regularly.  people who read my blog, or are friends on facebook, or even who know me in real life.  and somehow they seem stuck on labels.  stuck on the delays.  stuck on her being deaf.
we are aware of these things.  but, that's not what we see.  that's not what we experience.  and that's not our daughter.
our daughter is super silly and loves to make funny faces.  she has a very animated angry yell when you stop doing something she wants you to do again.  she loves to play peek-a-boo.  she likes to hug her baby...and then shake her and throw her.  she's a mama's girl.  her beautiful blue eyes could get her just about anything she wanted from us.  thankfully, she hasn't yet figured this out.  she loves whipped cream.  and suckers.  she thinks her sister is the funniest.  she has a beautiful smile, and somehow she does it with her whole body.  she loves to snuggle in on your shoulder when she's tired, or just wanting a hug.  she gives awesome sloberry kisses.  sometimes they have some teeth to them. she is the most stubborn human i have ever interacted with.  her reaching with her arms to get picked up works every time.  she loves to wait until we are out of the room to get into things she isn't supposed to.  she loves snuggling her blanket at bedtime.

it's not hard for us to sort of push those other things aside as a result.  we forget them even.  when we look at our little, we see only our daughter.  because, that's who she is.

easter.

i was pretty excited for sunday.  for the first time, in six months, we were going to church as a family.  jason goes every week, but the girls and i have been sitting it out because of my huge fear of germs due to the potential for a virus to make our little very sick.  again.
we had shilo's lunch blended and ready.  i had packed abigail's gluten and nut safe lunch the night before.  i had awesome dresses ready for the girls...shilo was going to get to wear the one that abigail wore for her first easter.  last year's easter was a little less than celebratory.  abigail looked cute in her dress, and shilo looked cute in her new hairbow and baby legs.  but, the whole breathing through a tube in her throat while in the picu, put a damper on the day.

easter 2012

you have likely figure out at this point, that things didn't go as we had hoped.  papa and abigail got to go to church.  mama and shilo got to go to the emergency room.  shilo woke up unable to hold her head up.  we were a little surprised since this is what she does when she has had a seizure at some point in the night that was fairly big.  she had been on her meds for a week and a half at this point.  so we continue with the morning, and figured she would nap it off like she has in the past.  she had small seizures all during breakfast. and then after breakfast, she would seize a few times, and then puke everywhere.  i called neuro who said to give her an extra dose of meds (since she had likely puked the first one up).  she promptly seized and puked that one too.  so we went to the hospital.  she's fine now.  she was fine that afternoon.

we did, however, manage, to get some pictures of the girls in their dresses before shilo puked on hers. they didn't turn out great.

i feel like this could land on awkward family photos.

but next year, we WILL be getting some great pictures.  we WILL all be smiling, and happy.  and we WILL all be well. little agrees.

i'm fine.  why were you so worried?

sometimes.

sometimes, saturdays are boring...

  ...and sometimes, we paint.

The beauty battle.

A long time ago (probably close to three years if my math serves me correctly) I read quite often. I read books about parenting, marriage, and God. I read about Narnia and other nonsensical places that could captivate me for hours. I didn't really stop reading three year ago. My books just changed a lot; C.S. Lewis was cast aside for Sandra Boynton. I did not begrudge my new reading material.
However, over the last year or so I have found myself capable of finding time to read again. And so occasionally I will find something from the library, borrow a book from a friend, or reread something that's on our shelf. My latest read is what brings me to write this evening.
I probably put way too much thought into parenting and why we are choosing different things. Perhaps it's not possible to think about it too much, I don't know. I think about everything though. What I'm feeding Abigail, and why. What I want her to learn about eating and how what we are saying and so on plays into that. I think through what type of morals, life skills, and empathy I want to build into her. We intentionally read books, talk about things, and discipline in a way that we hope will instill these things in her.
One of my biggest fears though is having a daughter who grows up not knowing how beautiful she is. I tell her. Constantly. I don't just tell her she is beautiful. I tell her I love her hair, her eyes, her nose, her ears, her legs, her arms, her hands, and so on and so on. I even mention her armpits sometimes. I want her to know that each and every part of her little body was made fearfully and wonderfully and that I love every bit of it.
I will always vividly remember having her in a stroller when she was a little less than a year, and walking by a group of girls who were probably junior high. One of them very loudly proclaimed, 'Awwww look at the baby, she's so ugly...I mean cute.' Her and all of her friends laughed. When the laughter stopped (and I pushed aside the feeling of wanting to drop kick a 12 year old) I bent down at Abigail's level, and making certain that all the girls heard me said to her, 'You are beautiful, and don't EVER let anyone tell you otherwise.' We continued our walk after that.
I want to be certain that our voices, her parents, are much louder than societies voices who will tell her that she doesn't look like the magazines, or her friends, or the people on television. I want her to know that those woman who are airbrushed or a size 2 (and yes I actually am a size 2, more on that in a minute) are NOT the definition of beauty.
The other thing that I realized over the last few years was that if I wanted her to think she was beautiful, I was going to have to work on finding myself beautiful, or at least enough so that I wasn't bashing myself in front of her. Because as a woman who is 5'2" and 105 pounds, I still look in the mirror sometimes and see parts of me that I think are 'fat.' For quite some time in my life I could sit and pick myself apart telling you every last thing about me I didn't like.
But as I deeply contemplated how I wanted my daughter to view herself, and how I could go about parenting to make that happen, some things came up in my mind. I have always been quite petite. My family was made up of my mom who has struggled off and on with her weight, my older sister who has mostly always been a happy medium, me, and my younger sister who has also always had a battle with her weight. We were a family who talked about things we didn't like about ourselves. We said things about other people's weight, whether they be too big or too little. I had people make comments to me (and still do occasionally) about needing to eat a sandwich. I went through a time period where if I went to the bathroom after a meal one of my sisters would sit outside the door certain that I had an eating disorder (I didn't, nor have I ever).
Although those things are still painful for me sometimes, I don't think they even come close to the pain I watched my little sister experience. The name calling, teasing, being left out, and what it did to her self esteem is probably part of the reason it's been so important to me to make certain that I gave my daughter the self-confidence she needed. Because although we didn't tease her at home, she still dieted with my mom from a young age. She knew that she was thought to be overweight even by her closest family members. The strangest part about it for me has always been that if someone has asked me to describe her, her weight would not have come up. She is a strikingly beautiful woman, and always has been. Dark hair, bright blue eyes, tall, and a personality that draws everyone that meets her to her. I spent a large portion of my high school years being jealous of lots of things about her.
But, here is where things really clicked for me. After Jason and I got married I gained weight. Obviously not much because I'm still pretty small. However, there was still this voice in my head that was telling me that gaining weight is bad. I had to daily tell that voice (and it still comes up) that weight gain is not bad. If I am eating healthy and getting exercise then I'm fine. Even if I had stayed at the 95 pounds I was when we got married for the rest of my life, if I sat around eating junk and watching television all day, that would be unhealthy. I realized at this point that because I had watched those around me talk about being upset that they gained weight, needing to lose weight, and constantly dieting, it became ingrained in me. I don't think my mother was a bad mom. Don't read that into what I'm saying. I just think that by her saying negative things about herself and constantly battling with her weight I learned that as a woman that was just what we did.
So I declared when Abigail was born I would not say bad things about myself. I would not make jokes about my small chest, or any other body part I didn't like as much. I would not sit with my friends and talk about how much I hated my hair, my thighs, or my belly. I think, for the most part, that I have been able to hold up to that.



As I meandered through the library the other day searching for something to take home with me I came across a book entitled, Good Girls Don't Get Fat: How weight obsession is Messing Up Our Girls and How we can Help Them Thrive Despite It. I have devoured the book. The woman who wrote it has done tons more research, and is probably much better at explaining it, but her point expounds on what I have suspected.
She goes so far as to say that even if your daughter is overweight, you don't need to be the one to tell her. Society, kids at school, and lots of other people in their life will take care of that. She talks about lots of other things, and specifically mentions how parents negative self talk about themselves passes on to their daughters. She talks about how even small side comments like 'you really don't need that dessert' cut into a little girls self esteem quickly and can lead to eating disorders.
There is so much information in this book that every mother who has a daughter should know. Some of the things are mind blowing. 50% of 3-6 year old girls believe they are fat. Abigail is almost in that age range. I'm pretty certain she doesn't even know the word fat yet. I can't imagine my daughter coming to me sometime in the next year and telling me she thinks she's fat.
For now Abigail still likes to dance in the full length mirror in her room and make up songs. She often can be overheard singing things like 'You so butiful, I wub youw haiw, i wub youw eyes...' to herself. I know that people worry about their daughter's being conceited if they tell them they are pretty to often (we also tell Abigail she is smart, wonderful, fun, a joy, a great daughter, and so on and so on...we aren't only focused on her looks). I promise you that at some point the world will tell your daughter something different. So if you have a toddler, or even elementary aged daughter who knows she's beautiful, just keep telling her. Hopefully it will be enough to overpower the other voices that will come along in her life. Heck, I'd be okay if Abigail was still telling people she was beautiful when she is 25.

I decided to post this picture because it is the closest things to a full length shot of me that I have. I would NEVER be comfortable posting a picture of just me on here, or probably anywhere. But I think it's time I start learning to love me.

I would really love to hear other people's thoughts on this. Do you struggle? Do you see your daughter's struggling? Have you seen friends with eating disorders, and can you pinpoint what they might be from? Even if you go read the book and come back when you are finished, I would love to hear thoughts today, in a week, or in a year.




Still battling,