Advent

Advent.  The season of looking forward.  Expectation.  Excitement.  Anticipation. Celebrating.

No matter where I am in life, it always feels like there is this relentless hope that accompanies advent.  Remembering that Christ came like He said He would.  Hoping for His return.  The whisper of reconciliation that makes people believe that things might just be set right at any moment.

The next few weeks are calm for us.  The appointments are done for the year.  The presents are (mostly) bought.  School is on break.  We get to sleep later.  Tiny turns two. We see family.
But, January is working to overshadow.  It looms, just in the distance, reminding me of all the lingering questions.  The neuro-surgeon consult for Shilo.  The endocrinology consult for Asher.  The MRI and oncologist appointment for Abigail.  And, once that's over, we start February with Asher's second Mehta casting. 

For the past year, medical stuff has been relentless.  It's been a tag team of appointments, and new diagnoses, surgeries, and big questions. It's been a year of unexplained chronic bowel issues for one child, and new bowel issues for another.  Literally, my days are filled with a lot of shit.  And, despite the extra stuff, the regular things didn't show mercy.  We still had therapies.  And, homework.  Dishes. Laundry.  My kids still felt like they needed meals and snacks.  Books read, and snuggles. 

My whole being said enough months ago, and yet, there was more.  And, I didn't even realize how far I had gone into the darkness, until I sat in my house one Friday, desperately planning a way out.  So I nervously, and bravely, sat in my doctor's office the following Monday.  She, being the incredible doctor, and person that she is, was compassionate and empathetic.  And, we talked over medicine.

Last night, big and I went shopping together for a few things.  We spent the whole time laughing really hard.  People staring at us sort of laughter.  It had been a long time since I had laughed like that.  It was beautiful.  And, freeing.  It reminded me of who I was before.  I'm not sure when before was.  A specific day.  Or week.  A month.  An event.  But, there was a before.  One where I wasn't enveloped in darkness.  I'd forgotten that it existed because it had gone away so slowly, and so fast.  Like time seems to do.

So, as January tries hard to surround me, as future works to draw me back into a dark place, I finally have help.  I have an advent in my life.  It brings with it hope and the belief that things may just all be okay at any moment. 

post-partum body.

i didn't shower for the first few days. multiple nurses came in to check my incision and told me i could take the dressing off.  two days in a row the doctor came in and told me the same thing, and that i was free to shower.  but, i couldn't.  i was too scared.  not of pain.  i just didn't want to see it.  the place my son had been removed from my body.  it was new.  it was foreign, and it had not been a part of me the last time i had seen myself naked.
on the morning i was ready, i slowly peeled the dressing off, and stood in front of the mirror, staring.  there were still steri-strips so it wasn't a great view of what was underneath, but i got the gist of it.  i don't know what i had been afraid of.  it was just a line, cut just above my pubic bone, and well below my underwear line.  it was healing nicely. 

it has sort of become a routine now.  after i shower, i stand in front of the mirror for a while.  i stare at the reflection of my body.  it's a new reflection, not one i've ever known.  i don't feel shame.  i just want to get to know this new me a little better. 
my breast are the largest they've ever been, and covered in stretch marks.  they rapidly went from an a cup to a d cup during pregnancy, and the little lines that have formed on them show that growth.  i'm still amazed by the fact that they alone are able to nourish my son.
my stomach has decreased greatly in size, but is still soft, and much rounder than it was before a life formed inside of it.  the softness of it seems fitting for holding a tiny one against me to nurse, and snuggling up with him as he drifts off with a  belly full and milk on the corner of his mouth.
and just like the first time, i stare at my scar.  there are no more steri-strips.  just a pinkish line that runs across my lower abdomen.  i run my fingers over it again and again. there are still nerves that haven't regained feeling in it yet.  it makes touching it an odd feeling.  i move my hands away and stare.  i feel like society would have me feel ashamed of this scar.  i was unable to give birth the way most women do.  but, there is no shame.  this scar, this pink line that continues to heal, saved my son's life.  i love it, and feel some sorrow that it will always be hidden beneath clothes. 
i stare at my face and my legs.  they were very swollen by the time tiny came.  i gained around twenty pounds in the last three weeks of my pregnancy.  i had gained around twenty five in my first thirty three weeks.  looking at them now it's hard to believe or imagine where they were less than five weeks ago.
i'm still amazed at my body.  i'm amazed at how it grew life, and continues to sustain it.  i'm amazed at how very much went wrong, how very sick i was, and how quickly it has recovered.  i'm falling in love with my new self.  whenever someone says, 'you look great' i agree.  because i feel great.  it's unlikely that i will ever look like i did before pregnancy.  i'm okay with that.  i also will continue to sing the praises of other women and their incredible bodies. 

broken.

most of you who read this blog probably know, or have figured out that i'm a Christian.  with that being said, there are still things that some Christians practice that are far beyond my comprehension, and that leave my heart breaking.  some of them I have experienced myself, others I just know of.
one thing in particular is the tendency, of often well meaning Christians, to pray for people with special needs.  i'm talking walking up to someone in a mall that uses a wheelchair, proclaiming complete healing, and then, if it doesn't work, telling that person it is a sin in their life, or their lack of faith that prevents their healing.
thus far, nothing like this has happened to us with our little.  and big's disabilities are far less obvious.  however, I wanted to share a story.  I do so having no idea what this man's intentions were, and not at all saying they were that of the stories like I told above.

a few weeks ago I was at church.  shilo had been in her gait trainer during music dancing a little, and I had just taken her out.  when I stood up, my husband (who runs sound in the back) got my attention and signed to me that the man between him, and me, walking towards us wanted to pray for shilo.  I had never talked to this man before, but knew a little bit of who he was.  I immediately tensed up as he walked towards us, fearing he would pray for her Down syndrome to be cured. (you can read here my thoughts on this, and why I disagree with the idea).
I began silently praying to myself that God would give him the words to pray, and that he would see Shilo for the beautiful little girl she was created to be, Ds and all.  the whole thing lasted only a few moments, and I don't even remember what he specifically prayed.  I do know that it wasn't for her to be healed.  and I do know that when he got to us, he immediately teared up and said, 'oh my goodness, she is just beautiful.'
he talked to my husband afterwards, and said that when he got to us that he was really sort of overtaken by her beauty, and had a hard time talking.  I felt like God showed him, in that moment, that she was just a little girl, fearfully and wonderfully created, in His image.

I've realized having two kiddos with genetic disorders that there are things about the silent and hidden disorders that are hard.  but, there are also hard things about the disorders that are obvious.  many people tell me they are so sorry when they see that shilo has Ds.  they see her as broken.  as less than.
what people fail to realize is that in our family of four, there is not one of us who is more broken than the next.  I bet if you picked apart our genes, Jason and I would have some crazy stuff going on too.  but even more than that, the only thing that differs between shilo, and her extra chromosome, and the rest of the world, is that she wears her differences on an easy to see level.  her almond shaped eyes give her away.

my eyes, on the other hand, hide the hundreds and thousands of things about me that are broken.  the anger I struggle with.  the fact that I often don't sleep well.  my anxiety.  oh my word the anxiety.    there are so many things about me that aren't up to par with most of the rest of the world.  but, when people see me, they think of me as average.
my goal in raising shilo is not to make her blend in.  my goal, is for the world to see her as whole.  complete.  no more broken than any of the rest of us.  most days, my experience is that she's less broken.  she is content.  she is joyful.  she works hard.  she is determined.  she is not easily swayed by others reactions.  she is forgiving.  she loves big.

things that are hard.

my writing on here has slowed down greatly.  it takes every last ounce of emotional energy to get through my days quite often right now.  i rarely want to talk about the really hard things of my life.  i'm afraid.  i'm afraid someone will read it and take away things i didn't say, and didn't mean. i'm afraid that someone will come here and decide that parenting children with special needs really is as hard as they thought it might be.
i'm reminded though, that sometimes, truth needs to be told.  hard needs to be shared.  and people will relate more than i could imagine.  so here goes.
first of all, i imagine that when i said things have been draining, you thought it might have to do with this pretty face.

and if you did, you are wrong.  while little comes with her own set of things that might seem like extra work, it is just the norm for us at this point.  plus, she is making huge strides forward developmentally, signing, and overall, is just a pretty easy going girl.

this girly, the one drawing with chalk, she's the one that sends me heart racing.  i lose sleep.  i shed tears.  i feel like perhaps i don't parent that well.  things have been tough.  i've been hesitant to talk about it, because it makes me feel like i'm failing.  the times i've tried to share, it gets written off.  'oh all kids go through a stage like that.'  or 'she's just testing the boundaries.'
but it's bigger than that.  jason and i have talked it to pieces.  and then, we decided we had to have help.  i can't spend hours every day just trying to keep her from falling apart, or eating something she shouldn't.  no, something bigger has to happen.
and so we await more appointments.  and we pray for answers.  and i fear the answers that may come.  but in the end, i need help.  and she needs help.  and our family will function much better if we know.
so please pray.  i am broken.  some days i see small glimpses of a little girl i used to know.  other days i wonder where she is, and if she will ever return.  i fear that NF has taken part of her.

tired friday.

her beauty.  those eyelashes.

her silliness.

larry boy getting fed through his g-tube.

doing her 24 hours.

i am not a fan of this stuff on my head.

look at all these cords i have to play with.

'what are you doing lady?'

'you're welcome, mama, for making sure you didn't forget i was here all. night. long.'

thankfully, papa let me go back to bed for a bit when i got home, and gave her a bath to get the rest of that junk out of her hair.  and now, we wait.

Tiny Dancer

Abigail woke up from her nap yesterday with soft songs coming through the monitor.  I listened for a few minutes and then climbed the steps to her bedroom.  When I opened the door her boundless energy began pouring out. 
'Mama I awake.  I took a biiiiiiiig nap.  I hungwy.  Where's Papa?  I gonna watcha Pudue wis Papa nother gain.'
I layed down next to her and kissed her face.  She moved away, 'No sank you Mama.'  So I rolled over top of her and declared, 'steam roller!'  She giggles and steam rolled me.  After determining I was 'flat like a pancake' she poured syrup on top and ate me.  The giggles continued to flow out of her as I wiggled and begged her not to eat me.
After she got up we made our beds and I sat in the rocking chair in our bedroom.  I turned on some music and for the next twenty minutes Abigail danced.  She twirled and jumped, curtsied and skipped.  And I sat quietly and drank it all in.
Sometimes I feel like I just can't get enough of her.  Her beautiful face, her curly hair, her big brown eyes, and eyelashes that go on forever.  I am completely mesmerized by her, and just get lost in her beauty.  I can't believe that she's my daughter.  How did I end up with someone so wonderful as her.
She giggles as she sways and declares, 'Mama watch dis.'  I watch.  I stare.  I don't want to miss a moment of it.  I feel like I can see her getting bigger as she dances, those moments of toddlerhood are passing before my eyes.  I don't want to look back and feel like I wasted them cleaning my house or rushing her along.

It's good to be reminded of those things, so when you are awake at 5 a.m. changing sheets because your three year old has her first stomach flu, you don't see the work and the sickness.  You see a little dancer who needs to be nursed back to health, because her audience misses her dances.  So you diligently scoop her up and do everything you can to make it all better.  And this time she doesn't say no thank you as you kiss her soft skin all over and 'swuggle' her.  She just melts in your arms and you pray over and over again that she will return to dancing soon.

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,