Thursday, January 19, 2012

serious cuteness.

Our awesome friend, Lauren, who has taken all of our family pictures, did our first session as a family of four not too long ago.  We don't have them all back yet, but she's been sending us little snippets when she comes across one she loves.  So here's a little snippet of our favorite thus far.  We have some serious cuteness happening at our house!


Go ahead and be jealous.

Tuesday, January 17, 2012

smart girls.

Today totally renewed me after really starting to feel worn down over the last few weeks.  Both of my girls are doing some exciting things so I thought I would share.
While Shilo is still little, there are some things we can work on to help with muscle strength and basic infant skills that don't always come as naturally to kiddos with Ds.  We work on head control, pushing our head up off the floor or off of our shoulders.  Tracking with her eyes (focusing and following something) and gripping on to objects or fingers. 
She has been smiling for about a week now in response to us which is huge.  Today I noticed she tried to follow something I was doing with her eyes so I tested it a little.  For the first time she actually intentionally tried to follow something in front and to each side.  She started gripping (mostly Abigail's fingers) and is gaining strength for head an neck control everyday.  She actually has gained enough strength to practice the same Houdini tactics that Abigail did at this age so that she works her top half out of our straight jacket like intense swaddling skills.  We are pretty proud of the gains she is making since we have really only had opportunities to work with her since her release from the hospital on December 20th.
video

So then my other girl got a puzzle of the states for Christmas.  She is getting really good at doing it, and can identify a lot of states that friends and family live in, as well as some of the others.  In the process I also taught her the 'Fifty Nifty' states song.  While it plays non-stop a our house, sending me into fits if temporary insanity, it is amazing to me how quickly she has picked up on it.  She doesn't get all 50 of them quite yet, but we aren't far off.
video

And lastly, although she loves to read, and letters, she hasn't ever been interested in learning to write letters, or even tracing them.  I'm not too stressed about this since she's three, but tonight she wanted to know how to write an 'A.'  After a couple times of helping her she was making them all over her paper.  So I decided to try to explain to her how to write her name.  The girl only needs to be interested in something in order to take off and do it.

So there you have my two very amazing little girls, defying the odds, and rising above the labels!

Sunday, January 15, 2012

The lies I like to tell myself.

I often have a wrestling match with myself for about a week before I decide to get honest.  It's not like fight club type of stuff where Jason wonders exactly where my black eye came from.  It's just me feeling one way, and then another, and then trying to convince myself which one is actually right based on my feelings.  Don't get me wrong, feelings are a good things, but if I always went with what I felt there would be times when I would likely kick people.
So the last nine weeks of our lives have been chaos.   And while I feel like we are finally settling in to a routine, it isn't necessarily an easy one.  Every time I start to feel overwhelmed by the different things that can be overwhelming I tell myself this can't be hard because we chose it.  We chose Down syndrome.  We said yes to the heart defects, and so I must be okay with it.  (I'm utterly aware of how ridiculous this is, but I'm being honest none the less).
So today at church, another woman had a conversation with me about her daughter having the stomach flu, and how hard it was to watch her child be sick and feeling unable to do anything.  Then she said she thought of us and how hard it must be to have the 'not going away' type of stuff going on.  I had to fight to stay composed for a minute.  For whatever reason, I needed to hear that it was okay for this to be hard.
So here goes.  I am overwhelmed.  I hate that when, and how much, my daughter eats is dictated by a doctor.  I hate that her heart defect makes her so tired that she spends most of her time eating and sleeping.  When she is awake, I feel like I need to work on therapies with her, but also just want to sit and hold her and talk to her so we can get to know each other more.  I hate that her little chest is going to be opened up some day.  I hate that she will have a big scar on it.  I hate that she has to be on oxygen, and have an NG tube.  And all of these things are a lot more compounded by the fact that Jason and I are both tired, and in need of some us time.
Please don't read that as any sort of regret or second thoughts about our choice.  I am thankful beyond words that we get to be Shilo's parents.  She has started to give us small smiles, and they make my heart flip flop ever time I see one.  She is so layed back and easy going, that even when she is hungry, all she does is make clicking noises with her tongue instead of crying.  She also, for whatever reason, believes that being buckled into her carseat means that she should immediately poop and then cry until we can get to a place to change her.  She tolerates her sister's antics of trying to help her clap, dance, or take her paci while she is sleeping.  These are all things that we find fun and amusing about her, and that bring us great joy.

So there you have it.  Would I change our lives?  Absolutely not.  Are they easy?  Nope.  I am reminding myself that a lot of these things will change after she has her open heart surgery.  And some part of me really looks forward to being on the other side of that.  But for now we will continue to do our best to adjust to our lives and remember that peace is not the absence of troubles so much as the living in the presence of The Almighty.

Friday, January 13, 2012

'Quality of life.'

I have learned today that hospitals, many hospitals, deny people organ transplants because of being mentally delayed.  I guess your I.Q. dictates your right to life.
CHOP is getting called to the table right now as the result of one of their doctors telling a family that their daughter couldn't have a kidney transplant because she was, 'mentally retarded.' 
If this story stirs you like it did me, do something.  Pass it on through facebook, your blog, twitter, and anything else you could think of.  Doctor's take a Hippocratic oath stating, 'first do no harm.'  I can not understand where allowing a child to die because of her lack of intelligence is 'doing no harm.'

Wednesday, January 11, 2012

My cup runneth over.

There are these moments in time where it almost feels like the movies where things are frozen for me even though everything around me is still moving.  My head and heart are trying to capture it, take it all in, and hold on to those moments so tight.  It's this weird knowing that this moment is ordinary and special all at the same time.  The feeling that Abigail won't always spend hours everyday dancing and singing.  The realization that Shilo won't always fit just so on my chest while she is sleeping.  So I close my eyes, take a deep breath, and hold onto those moments.  While a camera or a video may capture some small part of these special times, it doesn't do justice to the amount of joy our lives are filled with.
I realize that not everyone understand the what and why of us having two children with special needs by choice.  But in all my life, my heart has never felt so full.  I don't know how to even begin to describe it besides grateful and blessed.  Why God chose us to be these two little girls parents is not something I question, but I daily feel so unworthy of something so wonderful.
enjoying some little girl snuggles.

making use of my bridesmaids dresses.

dancing with one of our cinderellas.

seriously, these girls are in LOVE.

mama made her work so hard on head control that she fell asleep during tummy time.

Grateful for the little moments each day,

Little girls and their pigtails.


Abigail.  Two months.  Nine pounds, twelve ounces, twenty one inches.  Enough hair to rock pigtails.


Shilo.  Two months.  Five pounds, thirteen ounces, eeighteen and a half inches.  Enough hair to rock pigtails.
 There are no bald babies in this household!  And to the commenter who asked if Shilo's hair was red, hopefully these pictures clear it up, but just in case, the answer is yes!

Tuesday, January 10, 2012

'I don't Have Your Eyes'

A couple of months ago I mentioned that I had a book to review.  I can't remember what happened, but something came up we became parents again, went through a heart surgery, and another hospital stay and I didn't get around to it right away.  So here is a very late book review.
I was sent a free copy of the book, I Don't Have Your Eyes by Carrie Kitze.  The opinions I have are mine, and I am in no way being compensated for reviewing this book.

Each page starts with a statement such as, 'I don't have your.....but I have your way of...'  I appreciate this book because our family works hard to talk about the things that are different (Abigail's eyes are brown, like her tummy mommy, and Mama's are blue) and the things that are the same (Abigail loves to encourage people just like Mama).  The pictures have lots of diversity, and Abigail has asked to read this book over and over again. 
Overall I would recommend the book to other interracial families (adoption, or otherwise) The book can be purchased by clicking on the link above, or by going to http://www.amazon.com/.  It would be a great addition to your child's library.

Saturday, January 7, 2012

Life and resolutions.

This is what we have been up to lately.
Shilo sleeps a lot.

Abigail learned to balance her spoon on her nose, a very important life lesson.

We made a home for the Wonder Pets using every lego.

I stare endlessly at the sweet little features of my baby girl.

Shadows on the kitchen cabinets bring about smiles.

As do sisters, and getting to hold them.

And always remember, when dancing, to wear your safety goggles.



Our Resolutions this year:
1.  Laugh a lot.
2.  Enjoy life.
3.  Eat dark chocolate.
4.  Love others.

Hope you can do a few of these yourself.

Monday, January 2, 2012

shiloism.

In the past I have posted some of our favorite Abigailisms.  While Shilo doesn't do much outside of sleeping, eating, and staring at me while I try relentlessly to get her to smile, she does have one thing that we have noticed that makes us crack up.  Every. Time.
We couldn't hold Shilo for the first week because she had an umbilical i.v. and two arterial lines at different points.  So Jason and I would sit next to her bedside and rub her head, play with her hair, and talk softly to her.  Apparently it was comforting for her.  She can be in the middle of  crying.  Rocking doesn't seem to help, or patting, but rub her head, and well, here's what happens....
video

We love our sweet little peanut.