don't be fooled by cuteness.

this chain of events unfolds multiple times everyday in our house.  i am still amazed and perplexed at my youngest daughter, and how exactly this happens.  shilo will be sitting on my lap, facing me.  i will be interacting with her and looking at her.  and all of a sudden i notice this.

perhaps you can't tell what's going on here.  shilo's nasal cannula is on top of her nose as opposed to in it.  her hands seem to have been at her side, clasping each other, or being chewed on the whole time.  i never once saw her touch her nose, or rub it.  her sister is contentedly playing in another room.  and all i can do is brace myself.  

my oldest daughter's life is a musical.  at the doctor's office today she sang (into a pencil) as we waited, 'the door is opeeeeeeeeeen.  sooooooon dr. neeeeeeeeeelyyyyyyyyyyy will come iiiiiiiiiiiiiiiiiiiiiiiiiiiinnnnnnn the doooooooooor....'  it goes on from there.  this is our life.  singing, dancing, noise, chaos, energy.  however, i always know where she is, and what is going on.  she's singing it for pete's sake.  she's a smaller version of mary poppins.
but shilo.  well, she is apparently a ninja.  she has some sort of crazy fast reflex ability to get her oxygen out while i'm looking right at her, and without me noticing.  and to be quite frank, i'm scared.  because the combination of mary poppins and ninja fills my mind with a little girl singing and distracting while the super fast ninja loads up the cookies, and they skip away filling their bellies with sugar while i'm left oblivious to the supper spoiling loot that's being enjoyed.

big and little.

big

there was a prayer i prayed before abigail came, one that takes a little explanation.  you see i am of average intelligence.  this isn't a 'woe is me statement.'  i'm not putting myself down.  i'm average.  it's fine.  i did fine in school for the most part.  i sucked at math (still do).  jason, he's of well above average intelligence.  and this causes him to really over-think some things.  it certainly helped him (and continues to help him) in life, but there are things that he must understand before accepting.  me, not so much.
so when we were praying for our first child, i prayed for a child who didn't cry through geometry homework and still get a d, but also one who wasn't so intelligent that they had to understand the reasons for things to accept them.  perhaps God thinks He's funny.  perhaps i just don't know what is best for me.  either way, my older daughter is definitely closer to the end of needing to understand everything.  some of the thoughts she has, conversations, questions, they just blow me away.
so on friday night we went on a mama and big date night.  we went to johny rockets, got her some sandles (and she picked out matching pajamas for her and shilo), and just hung out together.  as i am in the habit of doing when we are in the car alone together, i turned off the music to initiate a deep (she's strapped in and can't escape) conversation.  she has been having some moments of 'being mean' to her sister.  i wanted to try to understand them, without asking, 'why are you being mean.'  so i brought up mama and shilo being gone so long, and how that felt, and us being home, and what she likes about that.  somehow i managed to lead into what i was trying to say (i'm guessing somewhere they Holy Spirit took over because i don't remember what i asked to get this response).  abigail thought for a few moments, and responded (more of less) with this (mind you she is three):
'mama, sometimes you say 'hang on one second please, hang on one second please, hang on one second please, over and over and it makes me angry.  then i hurt my sister because i'm angry and i want you to pay attention to me.  when i hurt her, you pay attention to me.'

all right, my three year old just verbalized.....ummm....that.  we talked about other ways that she could get my attention that would be more appropriate (like saying, 'you keep saying hang on one second please, and i really want some attention).  we talked about how silly it would seem for me to hurt papa if i was mad at abigail, and how sad that might make him.  i just had a crazy grown up conversation with my preschooler.  and this, my friends, is both wonderful and extremely scary.  because she is going to be smarter than me within the next few years, and then i am not going to know what to do.

little

tonight, i held shilo as she did her nebulizer before bed.  i could see her eyes getting heavy.  and like we did with abigail, we want shilo to learn to sleep in her bed, and to be able to lay her down awake so she learns to go to sleep on her own (even if we rock her or snuggle her right until her eyes can barely stay open).  but it went so quickly with abigail that one day i woke up and she didn't want to let me rock her anymore (thankfully she still loves snuggles).  and so i pulled shilo in closer and held her a little tighter.  she quickly settled in, and her little body became limp in my arms.  she molded perfectly into the crook of my arm, and i stared at her beautiful, peaceful face.  memories of the last few months rushed over me quickly, and my eyes welled up with tears.
if i let my mind go too far, too fast, i am suddenly sitting in a hospital room, exhausted.  i have a little girl who hasn't slept in two days unless i was holding her.  and finally, i give in and let the nurse hold her so i can go to the bathroom and grab breakfast.  and as i walk in the ronald mcdonald house, and the phone rings, i know it's about my little.  it's the actual doctor on the other end, talking about her needing intubated, and her heart slowing down so much that it wasn't pumping blood, and chest compressions.  and i stand there alone, people walking in, staring, with tears streaming down my face.  i feel guilty for leaving her, even for a few minutes.  i feel like if i had stayed she would have been okay.  i know this is untrue, and irrational, but even now, when i think about it, the guilt is heavy.
but i also try to fast forward through the ugly parts.  the hard days of not knowing if she was going to make it.  the short nights of trying to get sleep, and feeling guilty for leaving shilo at the same time.  and the day we handed our daughter off to the man who humbly and gracefully fixed her heart.  i remember six days later, when for the first time in nine weeks, i see my baby girl without a tube in her mouth.  i remember hearing her cry again for the first time, seeing her smile, and with every ounce of my being, finally being able to hold her.
i doubt that the memories of those 96 days of life will ever even diminish by much.  and i don't know that i really want them to.  they grew me, stretched me and taught me.  i would not have chosen this path for her.  but now that we are two months out from her heart surgery (and almost a month home) it seems like so long ago already.  life is happening, and it feels like this is how it always has been.  dishes and laundry.  walks and swimming.  books, and toothless grins.  it's all the same as it was before really.  

but, even though nobody else may be able to see it, it will never be the same.  we will never forget what it's like to not know.  i will never forget trying to figure out what words to tell my big girl if her sister doesn't make it.  we hold in our heart that we have been given two very beautiful gifts.  and so i hold a sleeping baby longer, just because she won't be a baby forever.

yes, we are truly blessed beyond measure.  i know people probably believe that because we have two small children with special needs that we must sit around, sad, and bemoaning how hard and unfair life can be.  but, i assure you, our lives are pretty normal.  i mean, look at these two sisters, with their matching pajamas, and tell me it doesn't look like most other homes (you know, aside from the fact that the sisters are different races).

our family motto.

here lately i feel myself saying or thinking the same phrase over and over again.  whether the question is how we are adjusting, how we are sleeping, how the house/yard look, or anything else.  the answer is 'we're trying.'
i'm trying to make certain to do as much as i can with shilo everyday to help her with all of her ifsp goals.
i'm trying to make certain i read to abigail, play with her, and just spend time with her everyday.
i'm trying to clean/pick-up the house everyday (if you want to see proof, come around 3:45 when children are napping, and i have finished everything).
i'm trying to take the time to plan and cook healthy meals for my family everyday.
i'm trying to spend time with my husband in the evenings.
i'm trying to weed the overgrown flower beds (from my time away from home).
i'm trying to get enough sleep (bahahahahahaha).


so that about sums us all up right now.  we are trying.  we are readjusting to what life looks like here, and a little girl who is starting to fall into a scheduled routine (praise the Lord).  i often remind myself how much pressure i am putting on myself to be doing everything, everyday.  and then i see abigail giggling as we play hot potato, and look around at the carpet that needs vacuumed, and the dishes that need done, and decide that laughter is way more important.  because, in reality, i'm a stay at home mama; not a housewife.  therefore i do what i can about the house, but my kiddos get priority.  so if you stop by, and think, 'oh my word that woman's house is a hot mess,' please step in and look further.  my kids are happy.  my husband and i enjoy each other, and our children.  and the toys can be picked up tomorrow.  plus, just try and remember, we are trying.

what we have been up to.

let's start by being really honest.  i. am. exhausted.  not even the kind where getting a few more minutes of sleep, or squeezing in a nap would make me feel refreshed.  a very (very, extremely, highly) energetic three year old, an almost seven month old who's skill level is closer to one month (if i had to guess), middle of the night feedings, sleepwalking (by energetic girl), appointments, and a house that is somehow is incapable of cleaning itself, or at very least doing the laundry, and my days have me feeling ragged.  even with all that though, it's still SO much better to be at home.
shilo is still doing really well.  some of her meds are being decreased, and so we were able to drop the 5 a.m. feeding.  so papa and mama take turns getting up at 2, and getting a little bit more sleep at  night time.  the med decreases some days make for a very fussy girl, but overall she is content as could be.  and did i mention she sleeps well at night time?  lay her down at 8, give her a blankie, and within minutes of her rubbing her face with it she is out until 8 the next morning (she sleeps through us hooking her to her feeds).
abigail still prays multiple times a day, thanking Jesus that mama and shilo are home, and we are all a family.  she has enjoyed getting to just hang out at home most days, but also some fun daytime activities we have all done.  she is loving all over her sister, always wanting to hold her, and make certain none of her tubes are doing anything they shouldn't be. (oh so helpful).
since coming home shilo has gotten to enjoy her first trip to the local farmer's market, two concerts (one was a benefit concert for our family, more on that in a minute) a trip to the local garden's type place where we saw tadpoles, fish, frogs, turtles, and so many beautiful flowers and plants, and our daily walks through the neighborhood.
the benefit one was sort of a 'hey somebody wants to do this are you okay with it?' thing.  we were like sure.  and we thought for a while about what we would do with whatever we got.  we have decided to try to find some adaptive toys for shilo since she can't hear.  i never thought about it until she came along, but almost every baby toy out there attempts to get your attention by making a noise.  if you touch it, it rattles.  if you push a button it plays a song.  well, if you are deaf, this doesn't make one difference to you.  so you have to find other ways of 'rewarding' the touching of a button.  i have a friend who has a daughter who is both blind and deaf, and has been a great resource for how to go about getting things that would be beneficial to shilo.
and as for the concerts with a deaf little, she can feel the vibrations from the music.  the second concert was a symphony on the green at the local college.  we layed shilo on a blanket and she loved it (she cried when the music was over).  our family is one that greatly enjoys music.  it brought my heart much joy to know that shilo was enjoying the music as well.
our only bigger upcoming thing is that we will be going back for a 24-48 hour hospital stay for shilo to get a g-tube placed as well as ear tubes (they will also be doing a test during the stay to see if we could turn her o2 down or off).
so that's life as of now.  i'm so glad that it's summer and we can all be doing more outside.  we are planning a trip to the local (free) splashpark this week as well.  and for now, my house is a wreck, dishes need done, but i'm going to sit because both girls are napping at the same time, and i need a break. :) 

sassy pants eating popcorn with her papa

little hanging out on papa's lap

she thinks she needs to make faces every time i take a picture now.  but she  looked beautiful all dressed up for symphony on the green.

i kid you not, this is really what shilo's lip does when she is sad.

enjoying symphony on the green

the three girls in front of frog baby.

home.

i haven't updated again for a while.  sorry to leave you all hanging.  i've been kind of busy though.  i've been playing candy land, and the sock monkey game, reading books, going for walks, and playing at the park.  i've been watching sisters with their secret smirks that speak a language only understood by them.  i've been snuggling littles and bigs at the same time, all day, everyday.
and at the end of the night, when they are both tucked in, i've been sitting on the porch with my husband.  sharing our day; laughing at things abigail has said or done, wondering at the blessing of two little girls, and sharing life.
yes.  we are home.  we got home monday evening around five.  i have intentionally neglected spending any time on the computer because i had much bigger and better things to be doing.
shilo is doing great.  and like jason and i assumed, we fell right back into life without much thought to it.  while we by no means love hospitals or doctors appointments, we are learning that God has created the two of us in a way where we seem to handle the craziness of life without feeling like it was a huge deal.
and i won't say this has been suggested, or that it hasn't, but in NO way, shape, nor form do we regret our second daughter.  we DO NOT feel like we got more than we bargained for.  we DO NOT feel like it was unfair.  she is our daughter.  we love her with a fierce love.  she got sick.  and when your child is sick you do whatever you are able to, in order to care for them.