healing.

the boy next door was seventeen.  he had cerebral palsy.  i heard the words aspiration pneumonia   i saw his body all gnarled up in the bed.  he moaned a lot.  and the only time he stopped was when there was music playing.  that, and the day he died.  then the moaning was different.  it was from mom and dad.  brother and sister.  grandma and aunt.  and i wished for the other moans to return.
somewhere down the hall i hear yelling.  everyone hears it.  is is the pained cries of a mother.  and the strong angry voice of a father.  'that is my son.  this is my son. no not my son.'  and i try to block it out.  but i know what is happening.  and my heart turns in my chest, and i wish to be somewhere else.
i watch as people file in. i notice faces that i've seen before.  and even with the door closed, i can hear the sobbing.  so many young people filing in the room.  and then i see post on facebook, and suddenly i realize.  she is from the same town as me.  she is brain dead.  she is fifteen.  and she believed her life no longer worth living.  and i wished to be able to talk to her before she took her life.
a little boy.  a grim diagnoses.  remission.  the return of the ugly word.  stem cell transplant.  and a very fast downhill spiral that lead to a mother and father saying goodbye to their only child.  she came to tell me when they got the news.  'there's nothing else they can do.'  and i wished for words that could heal.
and the little next door.  i hear the doctors during rounds.  congenital heart defect.  that's what my little has too.  they have done all they can.  she will not make it.  right now though, she is just a very tired little.  her fade is slow.  and she fades alone.  no family comes to see her.  the nurses hold and rock her while they can. they put her in a swing sometimes.  they turn on music.  and i wish for the ability to take her home, and hold her, until her little heart stops.  i wish for her to know love.
these are the stories that haunt me, even after five months of being home.  while i lived in a small room, that felt a little like hell for a time period, these people, they didn't get to go home and celebrate new milestones.  they didn't have a release date from the hospital.  some drove home with empty carseats.  some have passed the next birthday only to continue to feel the ache of the loss.
shilo, she lays in her bed right now, sleeping soundly.  she is snuggled up with her blankie and a full belly.  her big sister sleeps a few feet away.  and while life is not perfect, nor easy, it is lived.
and whenever i think of these families, i think also of a sweet little from a short time before abigail came to be.  she was beautiful.  the exact same size that shilo was when we met her.  she had a head full of hair, and a home full of love.  i held her, but not until after only her body remained.  and at her funeral, i bent down, and kissed her head.  i wanted to kiss it over and over again, like i do my girls now, until i see the slight wiggle of annoyance.  she runs free now.  plays.  laughs.  sings.  and my heart longs for her, only a slight amount, compared to her mama and papa, to do those things here with her big sister and little sister.
my heart is longing to reconcile these things.  children dying.  a God who loves and gives good things.  and so, it wrestles.  it cries out for answers, searching endlessly through a book that has them.  but sometimes, there are no answers.  there is only the holding on to things i already know.  the stories from long ago, and the knowing that He gives good and perfect gifts.  the belief that He is good.  and the knowing that when He calls us to the fire, He will not withdraw His hands.

transracial adoption.

a friend just posted this video on facebook.  i laughed.  but really.  i have heard most of these.  and generally, in front of my kids.  i know that most people are just curious, but think of it this way, how would you feel if i, a complete stranger, walked up, and asked you if your birth was vaginal or c-section?  did you tear at all?  right.  starts to make you super uncomfortable.  because, those are details you only share with the people you choose, and you don't expect to be asked about.  just because my children are adopted, does not mean that those social boundaries change.  so when in doubt, don't ask.  and for the love of everything holy, DO NOT touch a child's hair just because the texture is different than you are used to.  it's rude.

too crowded full sized bed.

i started shilo's final feed, and then silently knelt next to abigail's bed.  i just looked at her for a few minutes, her four year old self all snuggled under her blankets, with her night time hat on, and lambie lying next to her. she's my daughter.  four years, and it still takes my breath away sometimes.
the beauty, the hardness, the pain, and the joy of adoption all mingle together when i think of how she came to be ours.  i begin praying for her.  for me.  for jason. because more than anything i've ever wanted in my entire life, i want to get this parenting thing right.  not perfect.  not without mistakes.  just right.  i don't get a second chance.  
and i moved over to shilo.  a new wave of emotions sweeps over me when i see her.  her adoption story makes my mind feel more of a fuzzy blurry feeling.  it happened.  fast.  and almost a year later we are still trying to figure out how it all went down.  
but another emotion always comes to surface.  so i begin praying and fighting tears.  i feel so guilty.  i still have a hard time looking through those early pictures.  remembering what it was like to hold shilo up in her little nicu crib, and watch her suck down a bottle.  and watching her lie there, her food being pumped directly into her belly.  those two things always crash together flooding me with the days i thought she would die, and hearing families around me grieving as their children did die.  the doctors, the being away from jason and abigail, and the healing that is still taking place as i work through it all.  and as always, i end these thoughts with the feeling that i'm completely inadequate as a parent.  for abigail.  for shilo.  for anyone, because my daughter got sick and spent three months in the hospital, as if the guilt will somehow, someday, erase that the bad things ever happened.
and jason, he reminds me, every time, that i am the perfect mama for shilo and abigail.  that is the reason God chose me to be their mama.  and he begins listing the things i do well.  and he tells me how amazing i am at doctory stuff, and being patient.  and i believe him, despite not really wanting to.  and i start to get wrapped up in the peace that is emanating from his strong, deep voice.  his words wash over me, as they have the other hundreds of times he has said them, and they rush quickly to those places that are still so open and raw.  a soothing balm, that brings tears to my eyes.
and at the end of the night, when feedings are done, and jason lies next to me sleeping so soundly, as i fight hard for my mind to turn off, i become overwhelmed again.  but this time it is with joy.  i have an incredible husband.  he works hard.  he encourages.  he plays veggie tales with abigail, and soothes shilo in the middle of the night.
 i have two really amazing daughters.  i have a big girl, with sass, and a style all her own.  her heart, and intelligence often leave me speechless.  and i have a little girl, content in all circumstances, who's smile chips away at my heart a little more each time.
and our world is imperfect.  our house is often very lived in.  our hearts are all jumbled up with trying to figure out what it really looks like to love Jesus, and love others.  our yard doesn't get mowed often enough.  but some mornings, we all pile in our bed after the girls wake up, and become a mess of arms and legs and bodies, too many for the full sized bed.  and we all erupt into giggles.  it's at these moments that i'm reminded just exactly what God saw in our future when He chose us to be parents.  He knew about the mistakes.  He knew about the hard things.  and He focused in on the too crowded full sized bed memories that would be made.  and He said, this is the perfect place for these two girls.

laughing. yelling. trying not to cry.

both of our daughters make us laugh. a lot.  shilo's funniness is less likely to be appreciated when shared on a blog.  things like me saying something out loud to her (even when she couldn't actually hear me) and her shaking her head no.  then all of us would erupt into a pile of giggles.   see, probably just not as funny to read about as it is to witness.

anyway, abigail has had some great little anecdotes lately.  some of them we must stifle our laughter, or i wait to laugh util i share it with jason.  but the girl is funny.  and on a day like today i need some funny.  because apparently, abigail's ears, arms, legs, and eyes are all malfunctioning today.  she is incapable of hearing my voice, following directions, going to get something, opening a drawer to look inside, and even if the drawer is open she can't see whatever she is looking for.  so as nap time nears, and my patience wears thinner, my voice gets closer to yelling with each passing infraction, and she does something ridiculous that sends me to the point of wanting to cry and i call my husband and ask him to pray that her ears would work and mama doesn't lose her..... she always does something funny.  always.  it's like she has the most impeccable timing for knowing when comic relief is the only thing that will keep mama from banishing her to her room.  so without further ado, here are a few of my favorites from the last little bit:

while laying on, hugging, and generally wallering all over shilo until she starts fussing (at which point i repeat for the hundredth time, 'shilo is crying.  what is she trying to tell you?'  'no sank you.'  'yes, so please get off of her.') abigail suddenly sits up, looks at shilo, and says, 'i love your g-tube.  where did you get it?'

on a night when jason was working late, and mama was feeling overwhelmed by a long day, abigail was playing with her car.  she pushes it into the room i'm in with shilo and proclaims, 'the mama and papa are riding in the front.  the kid is in the trunk.'

one of abigail's favorite foods is french toast (and she's really good at making it).  so i have found a loaf of gluten free cinnamon raisin bread that i use to make it with.  while eating it for dinner one night abigail took a bite, looked up and said, 'mama, what's in this bread?  razors?'

*first a disclaimer.  every time i see a picture on a commercial, magazine, etc. of a family happily gathering around the table for some scrumptious meal, i laugh.  out loud.  that doesn't happen.  ever. anywhere.*  in our house some meals are nice and abigail eats well, shilo sits in her seat and i only have to ask abigail to stop making her food talk to each other and eat it 50 times instead of 5000 a few times.  some days she messes around and i finally just banish her to her room until she is ready to eat.  on one such day she came back downstairs and said, 'mama, i'm sad because you hurt my feelings.'  'how did i hurt your feelings.' 'when i wasn't eating, and i was whining, you told me to go to my room.'  (if you are looking for a response to this sort of thing in your own home, mine is 'disobedience leads to painful things.')

we were getting ready to leave the house this week.  i had to run upstairs to grab something.  within a few seconds i heard abigails footsteps behind me.  she walked in my room and said, 'mama, i'm sorry.'  'for what baby?'  'i'm sorry for playing with shilo's hearing aid.'

yesterday i sent her to go potty and take off her glasses before nap time   she came out with her glasses still on.  i sent her back to take them off to which she replied, 'mama, could you not come in the bathroom with me please?' 'why abigail?  what did you do?'  'i was putting on chopstick (chapstick to the rest of us) and it fell off the top.'

and today has been just a rough day all around.  i made shilo's bottle and asked abigail to throw away the empty can of formula while i finished things up.  i came around the corner where the trash can was, and there she stood, LICKING the empty formula container.


hope this brings you all some laughs too.  at very least i will enjoy looking back over them myself someday!!!

another hearing aid chapter.

this hearing aid saga has been a long one.  filled with frustration, red tape, being dinked around (possibly for financial gain), and then there was today (although i guess i need to fill you in on the mri and results as well).
we saw an e.n.t. at the end of august.  he also scheduled an mri to look at the inner working of shilo's ears.  he had sort of wanted a c.t. scan, but i told him that after around 150 x-rays in her short life, that a c.t. scan would take a lot of convincing due to exposure to radiation.  he agreed.
the day of was fine.  it was strangely calm, likely because i've sat through six sedated mri's before, and this one, they weren't even looking for tumors.  so it felt, strangely normal.  about a week later the doctor called to give results.  not a nurse.  the doctor.  and he apologized that it took so long, but 'he read the report, and had to see the mri for himself because he was just having a hard time believing it.'  seriously, that is an AWESOME thing to hear about your child.
so shilo's right ear (which is the ear that has the worst hearing ability), the nerve between the cochlea (the bone that vibrates to transmit sound to your brain) and the brain was underdeveloped.  he had, 'never seen anything like it.'  and the other ear had some issues in the middle ear with some sort of build up.  we could possibly get that worked on surgically (we will actually have to have a c.t. scan to see what is in there before they can do anything) and it would help her hearing on that side.  so we took the results in stride. we had no high hopes of it being an easy fix.  and we made our appointment to get the bahas today.
so we showed up, and had been told to expect it to take around two hours.  it did not.  and the audiologist we saw is the same one who treated me like an idiot when shilo was inpatient.  when we left jason even said he didn't like her (as a doctor, i'm going to assume she's a kind person outside of work)-and he seems immune to the condescending and rude things that make me want to lose it on some people.
in order to get the hearing aid, they will have to apply for pre-approval through insurances.  as soon as she said it, i immediately asked if we weren't getting a hearing aid today (because i likely would have laid on the floor, crying, screaming, and throwing a tantrum).  but they give loaners.  so she showed us how to work it.  but we can only get one (even after insurance approval?!) until she is old enough for the anchors to be implanted-when she's five.  only four years and one month left for that....
and then they explained they would do a special test every time to see if her tubes in her ears were open so the fluid she had in her ears wasn't causing her any extra hearing loss.  i pulled out the name of the test (a tempanagram) and impressed everyone, and then had to tell her about eight times that she never had fluid in her ears (if you didn't reread, or don't remember, she was the doctor who insisted on tubes before she would do hearing aids).  the other 'surprise' of the day was the band for the aids.  we are not opposed to paying for whatever we need to for our children.  we didn't realize we would have to buy a band today in order to come home with the hearing aid.  it's a soft band, much like an elastic headband, with a hard plastic peice to attach the aid to.  anyone want to guess how much it cost us?  anyone?  $75.  i almost fell off my chair.  it's not so much because of the price (i'm aware that medically stuff gets marked way up because they know we don't have other options) but that nobody gave us a heads up before the appointment.  we did, personally, have the money to pay for it outright.  but i can't imagine being a parent who didn't, and having to say, no, we can't get what my child needed because we weren't expecting that expense.
so the big picture is: she has a hearing aid.  she still doesn't understand what she is hearing, because she has never done it before, and it will take a bit for her brain to assimilate the noises and such.  we are super excited about it.
the other side is, i feel torn at this point.  we have a follow up in november, with this doctor.  i plan on keeping the appointment-because she should get her actual aid.  but frankly, after that, i don't want to see her.  ever. again.  we have a few other options, but i'm not sure where to even go from here with those.

sooooo....we have at least one more chapter in her hearing aid story, but more likely many more as we figure out her aids, what to do with her left ear, and getting anchors when she's five.  for now though, here is a picture and some brief info on bone conduction hearing aids-or a bone anchored hearing aid on a soft band.

shilo in her hearing aid.  i plan on blinging this headband out, as well as making some big clip on flowers to cover the plastic look of the aid.

a bone conduction hearing aid, takes sound, turns it into vibrations, and conducts those vibrations (through the bone in your skull) to your cochlea-which then sends the info to your brain as sounds.  shilo's does not bring her hearing to a level of perfect (she is now at a mild to moderate level).  there is a piece we got with it that is hard plastic, that you can attach it to to test to see if it's working.  so we did play a little.  and it's crazy weird.  you can bite down on the piece and hear through your teeth.  sort of fun.  if you are interested in reading more than my amateur interpretation of how a bone conduction aid works you can go here.  or just google bone conduction hearing aids or bahas and read until your heart is content.

eating therapy.

in an attempt to get shilo interested in taking some food by mouth-instead of all by g-tube, we are (almost done) doing a three day, hunger inducing, food trying, therapy weekend.  it entails only giving shilo water during the day through her tube (so she's hungry, but not dehydrated), and then offering her food by mouth during the three day-times she would have gotten formula. (she still gets formula at night time).  it's pretty much as exciting as it sounds.
it has not been a success, it has not been a failure.  it is just a step in the direction of reducing shilo's dependence on a tube for eating.  she gags a lot.  and jason and i work hard to keep our faces upbeat and happy so the whole thing feels like a good experience for her.
today, at our noon feed (all we have left is the four o' clock and then we are done with the three days of fun) she actually took carrots, off of a spoon, multiple times, without gagging, retching  or vomiting.  in case this sounds not that exciting to you, it's a very big deal.  she doesn't tend to swallow much, more, just lets it sit in her mouth long enough to be complete liquid, then run back out of her mouth, but i *think* some of the carrots even made it into her belly.  even if the next feed goes back to crying at the sight of the spoon, we're going to call this a win.
and here is what shilo, abigail, and mama look like, after an hour long session of attempting to get (at most) 2 tablespoons of food into shilo.

i may fall asleep right here.

what?  i have something on my face?

pay attention to me.

okay, i'll climb on the furniture, that should get me some attention.

looking amazing, and holding it all together well.  

jason wasn't home for it, so you can question the validity of the last photo, but nobody is here to tell you otherwise.

and in all seriousness, we know that while the leg work may not be fun, but this is what it will take, and shilo will be eating like a champ some day!!!  until then, well, just don't drop by on one of those three day weekends....

a panic of sorts.

so i haven't written much about abigail's NF lately.  she still has it (of course).  we see things sometimes that remind us, like new freckling in her armpits or groin area.  most days though-she's a pretty typical four year old.
in the beginning of learning she had NF, and learning more about it-everything sent me to a place of nearly panicking   something would hurt-i was certain it was a new tumor.  she had a rough week of sleeping through the night-had to be a tumor.
i've calmed down quite a bit since then.  i don't think everything that comes along is a reason to run to the neurologist or have an MRI.  perhaps it's because we've officially dealt with a tumor, and it was pretty obvious she had one.  perhaps it's because, in general, when your child is diagnosed with something, you go through a lot of different ups and downs before you relearn to live life in a new normal.
so a couple of night ago abigail woke up in the middle of the night crying.  this doesn't happen really ever.  she was sobbing and telling us her eyes hurt.  and in a moment of mom+NF+being tired i considered the emergency room.  she settled back down and fell asleep though so i decided to call the doctor the next day.
i waited on a return call from the eye doctor to see if maybe i should call her neurologist instead.  optic gliomas (tumors on the optic nerves) are not uncommon in NF.  she saw the opthalmologist in february, and they don't tend to happen that quickly (and it's a little less common for them to show up after a child turns four).  the office called back and said they didn't think it was any actual NF eye issues, and threw out a few more thoughts.
so then i of course am wondering about a brain tumor, and/or migraines (both also are not uncommon in NF).  until, of course, she woke up from nap.
yeah, she's sick.  common, everyday, virus type of sick.  runny nose, sneezing, coughing, fever.  her eyes hurt,  probably from the sinus pressure that was building up.  she's pretty pathetic right now.  she layed on the couch all day, and cried a few times saying, 'i don't want to be sick.'
and i laughed at myself.  the differences between my feeling on Down syndrome and NF are incredible.  i don't worry much about shilo.  she'll get there.  it may be slower than others, but she'll get there.  and for the most part i don't worry much about abigail.  but there's always this looming 'cloud' of future for her.  we don't know what it holds, just the idea of progressive, and that, that looks different for every person who has NF.
most days though, i don't have the time or energy to worry about the future.  i have to build pirate ships, and ward off pirate papa from stealing our treasure. i have to spend time smiling through the really hard process of reteaching shilo to eat.  so i allowed myself that one freak out.  and now i'm going to move on to bigger and better things.

a shout out.

during shilo's crazy long hospital stay, i met people.  some of them were, ummm, odd.  some of them were new parents just trying to wade through life in the hospital.  and some of them were veterans of living at the hospital.  while i was there, there were a handful that i really connected with, and who can probably share the credit of me not 1)punching a doctor, 2)screaming things at the families at the ronald mcdonald house who wanted to have a 'who's baby is sickest' contest (the other family always won, because i forfeit at that game), 3) needing to walk myself over to the adult hospital for a mental health consult from sitting in a dark room listening to beeping all day.
one of the people i met, happens to live in the same city as me.  we have tons of mutual friends.  and somehow, we hadn't ever crossed paths.  but by fate (or really by a mutual friend who was coming to visit her) we met.  we went out a few times for a late night nacho and adult beverage.  we laughed.  we traded doctor stories.  we made bows for our cute girlies together.  we enjoyed the isolation policies.  it may have been one of the few things that made the stay 'bearable.'
this friend, who's name is rachael, has spent time, with her little, in the hospital, since we have been home.  and on wednesday, she will be sitting in the surgery waiting area, as her youngest daughter, aria, has surgery on her spine.
so, while you are hanging out at home on wednesday, please be thinking of them.  send good thoughts and prayers their way.  spending lots of time in the hospital, with your kid, sucks.  rachael made it suck a little less.  if you want to do something for her, she is a fan of starbucks, and good wine (i imagine the hospital has a policy against wine. so you may want to stick with the starbucks).
and my last plug for her, is to encourage you to check out her blog.  she is funny.  and her story is one worth reading.  the socially inappropriate mom.