Friday, March 29, 2013

at the risk of sounding dramatic.

my big has a genetic disorder that is highly variable.  it is also considered progressive.  so i would like to start this post by saying, at this point, she is extremely mild.  matter of fact, overall, she's a pretty typical 4-1/2 year old.  nothing about her would stand out to the common onlooker.
we are thankful for this.  we know quite a few others who are dealing with much bigger.  much scarier.  and who's variable has landed them on the more severe end of the spectrum.  i do not take lightly that we are dealing with very little as far as nf goes.
that being said, i thought i would share our mri results.  it's taken me a few days to process all of this, and really wrap my head around what i'm feeling.
big had her mri on tuesday.  she rocked it.  no really.  she was so great the whole time.  completely unphased by all going on, despite the fact that she does not remember the last one that took place two years ago.  she woke up asking for french fries.  when one has to be put to sleep, run through a machine, and has a picture taken of their brain, they get french fries.  judge all you want.
and like always, despite the being told that results would come in two to three days, i called the next morning to hear them as soon as possible.  great news.  no brain tumors.  not as great news, her mri was abnormal.  she's fine.  nothing huge.  nothings scary.  just an abnormality that is common in nf.
so here's where i may start to sound a little dramatic.  forgive me.  i'm just trying to learn to deal with a disorder that can be quite mean.  two years ago in april, our big had her last mri.  we had hoped to not have to do any again, ever.  more realistically though, at least five years.  some people do them annually even if their kids have nothing going on.  we aren't into that.  especially since her masto puts her at a much higher risk for an anaphylactic reaction to sedation.  anyway, her last mri, clean.  beautiful.  everything inside looked as it should.
this mri.  she had what are known as ubo's (unidentified bright objects) on her brain.  they are mostly harmless.  they have been linked to lower i.q.'s, learning disabilities, and behavioral issues common with nf (adhd).  somewhere around 70% of people with nf have them.  our daughter has them now.  and this means, her nf is progressing.
it's a progressive disorder.  it's unpredictable, and what she has going on now means nothing about what she will have going on in a year.  but, i have to assume that most parents feels this way a little bit, we had hoped abigail's wouldn't progress.
i know.  that sounds ridiculous.  so now we are sitting here trying to calm ourselves back down and remember to be thankful for the day today.  today, we do not think she has any tumors.  and that's where we need to live.  but those stupid ubo's.  they're there.  and they are another reminder that she has this stupid disorder, and that is gets worse over time.  and whether big things, or small things, it will affect our daughter.
and so, i guess i will continue to sound dramatic for the time being, as i accept that we are going to continue to see things come up as a result of nf.

Monday, March 25, 2013

killing dreams.

most of us are familiar with the idea of the 'american dream.'  you know, the idea that we are all able to attain a life with prosperity, having nice things, raising awesome kids, and retiring to be able to take awesome trips, and spend time with grand kids.
our family bucked most of that idea a long time ago.  we don't want a big house, fancy cars, and lots of stuff.   we want time together, laughter, and willingly give up lots of things in order for me to stay home with our kiddos, like a second car, a cell phone, new gadgets, new clothes, and so on and so forth.  we're pretty content with it though.  i'll take playing candy land, teaching my children, and watching shilo sit alone for the first times over trendy jeans and a car payment any day.

before abigail came, when she was but the name that God gave to us, and a lingering desire, there was a theme for her life.  there was this one word that God gave us over and over to cling onto for her.  hope.  her middle name means hope in hebrew.  learning to hope when we waited on a baby, grew my faith.  learning to hope in the face of a diagnoses that leaves scary words rumbling through your head from day to day, has grown my faith.  watching strangers pour out their love, support, and financial support as we got ready to have a tumor removed from our daughter's leg, made us have hope, and it would be impossible to have anything less than faith as we watched 30,000 dollars pour in in less than a month.
since the birth of shilo though, i have had a harder time putting my finger on what exactly it is that i'm supposed to be learning.  there has, again, been hope and faith lessons.  but that never quite feels like the lesson at hand.  there have been a lot of lessons in learning to trust, even when things look different than i had thought or hoped.  but i still don't quite think that's where the lesson lies.  so i'm going to back up and be honest about some things.
first of all, i have sort of said this a few times on here, but i want to make this clear; when we chose to adopt a child with down syndrome, it looked much different in my head than what it does in reality.  a really cute kid with some cognitive and developmental delays was totally doable.  i had pictures of being able to tell people that lots of people with down syndrome grow up to become independent, some go to college, some get married, and some even own their own businesses.  sometimes i wonder if we knew then all that would come ahead if we would have made a different choice.  maybe.  i don't know really.  i can't imagine a different choice, because it would mean shilo wouldn't be here with us.  and i can't, knowing my daughter, say i wouldn't have wanted her.  because i want her.  and in reality, there are lots of parents, dealing with typical things who may not have had children, had they known what life was going to be like.  there is grace in the not knowing.
my struggle from the very beginning was in the fact that i didn't want to fall in love with her.  she had heart defects.  and ohs can have not great outcomes.  what if i fell in love and things went horrible.  but fall in love i did.  and about the time where i felt like things were going to be okay, they suddenly weren't.  and most of you already know the story.  hospital stay.  nearly died.  ohs.  home.  life changing.  and everyday since then has gotten a little better.  a lot easier.  and my love has grown exponentially for my little.  i think the being scared to fall in love thing is pretty common, judging by the song written by matt hammitt after he found out his son had a congenital heart defect.
we were in the hospital a year ago right now.  she lived.  she's here.  she great.  and she has way more going on than we ever would have guessed.  i don't love writing out all my children's labels in one place, but for the sake of this post, i will.  down syndrome, coarctation of the aorta (repaired), av canal (repaired), a second asd (repaired), cor triatriatum (repaired), pulmonary hypertension, hypothyroidism, congenital mixed hearing loss (deaf in the right ear, severely hard of hearing in left), epilepsy, significant developmental delays, and a g-tube due to dysphagia.
now, i still think my daughter is very intelligent.  just this morning she signed a two word sentence for the first time ever.  'kiss baby.'  that's pretty amazing at sixteen months, espeically when you spent quite a few months in the hospital.  none the less, at some point the pride i had that my child could grow up and do all of the things i wrote above smacked me in the face.  what if she is also severely cognitively delayed?  what if she can't ever live independently?  what if she lives with us the rest of our lives?
and this, this, is where my lesson became obvious.  because as i wrestled through these questions, i learned something.  thirteen years ago i gave my life to Christ.  i said i wanted Him in control.  and i do.  and most of the time that doesn't bother me, or scare me, or any of that.  but i didn't realize until our little came along that i still held on to the idea that our children would grow up, move out, and we would get to have all sorts of fun in retirement. 
so at thirty, i've been working through the idea that it's possible, that i may be parenting the rest of my life.  it isn't just shilo.  our big could have any number of things come up and take away some of her ability to function.  when we adopt again, we could end up with a child who has more needs than the two we already have.  we may be in this thing for a lifetime.  and suddenly, i was reminded that my life is not my own.
i believe that God called us to adopt.  i believe He chose the two girls we have in our home, to be our daughters.  i have found peace and comfort in the idea that my life is not mine to plan.  i do not need to look forward to retirement and all the great stuff that will come.  i need to look at today, and all the great stuff that is.  the future will be what it will be.  and no amount of trying to think it out, plan it out, and perfect it, will cause it to actually be, perfect.
so i accept where we are.  because i'm more than willing to kill any dreams i have left in order to be who God has called me to be; a mama to two amazing beings.  the american dream is a deception, a lie, and a thief of today's joy.

i choose, instead, to live the dream that God has for me.

Saturday, March 23, 2013

pink horizons.

the view out of the window is one that most probably wouldn't find pretty, but i do.  i see the parking lot diagonal our house, along with the empty car repair shop, and the trash and weeds that dot the parking lot.  i see smoke rising in the distance, just beyond the top of the building, from a local factory.  there are light poles and telephone lines.  but if you look for the beauty it's there.  just over the top of the building, is the pink of the skyline as the sun starts to sink down in the sky.  and for some reason, it balances out the scene, and makes it all beautiful.
i think i like it so much because it's how life is.  it's so easy to spot the ugly that dots the world.  but it's much better if you look past it to the beautiful pink.  it's there.  it just takes a little more work to see it.  i think it's really easy for people to look at our lives and see the hard.  for some people, i think they can't get past the hard and ugly things that dot our lives, and see the pink over the top.  but we see it.  we choose to live in the pink.
the scene i'm seeing, is all being taken in while almond shaped eyes flutter and fight sleeping, and two chubby hands reach up to feel my neck while i sing.  as i glance around, what was once the room that only my husband and i shared, i see a tea set and a baby blanket, big's sleep cap, and children's books.  big's pillow is still mixed in with ours from the four of us snuggling in bed together this morning.  i have one of those moments where i can't help but be in love with our family.

and maybe it was the pink of the day that helped me feel that way.
big has been interested in learning about maple syrup since we read about it in the little house series.

we found out there is a maple farm only about 15 minutes away.

they even shared samples.

it was a pretty big hit.  larry boy looks like he would really like to try some too.

making a silly face, and rocking her new glasses she picked out.  apparently i'm raising a hipster.

abigail holding the bottle we bought outside of the cabin where their retail shop is.

the building they do the boiling in (and the name of the place).

the lines that ran from the tapped trees throughout the woods all into the one building.

 because a trip to a place that makes maple syrup (larry boy included), and an evening spent playing at the park makes everything about the first days of spring feel good.  it makes all the ugly and trash of life feel like it no longer even exist.  it seems like all i could see was the pink.
but, then again, perhaps, an evening at home, playing, laughing, and enjoying life makes the pink stand out more.  or perhaps it's that moment, when those things you have been working with your little on, over and over, come to fruition, and you realize that your child is a genius...or at very least understands way more than you realized.

it doesn't matter the reasons so much.  what matters is that on the days that the trash and weeds stand out, you squint your eyes, and find the pink horizon just over the top of the abandoned building. the beauty is there.

Wednesday, March 20, 2013

this and that.

first of all, a little advice.  if, by chance, you will be stuck inside your home for multiple months due to a need to avoid germs, giving up all of your vices is not in anyone's best interest.  thankfully, i can still nap.

secondly, jillian (from the biggest loser) hates my legs.  and the feeling is mutual.  two days in to one of her work out videos, and i am considering purposefully dehydrating myself. the pain that comes from sitting and then standing back up, to go to the bathroom, is not worth it.

third, we are mere weeks away from re-entering the world.  i just purchased one of these bad boys for shilo to use.  i'm pretty excited to get to grocery shop in the mornings again, with both of my girls, while the rest of the world is at work.  sunday afternoons suck in grocery stores.

fourth, our video eeg results were....abnormal!  no big surprise there.  so we will be starting on seizure meds, and i will spend hours upon hours reading about the type of seizures she has, and watching youtube videos.  it's what all of the cool parents do.  i would tell you what they were, but abigail was talking at me while the nurse was talking to me on the phone.  i only grasped the really important things.

fifth, abigail and i had a three minute back and forth discussion, completely in asl.  now if only she would apply that to me signing, 'please wait' while i'm on the phone with aforementioned nurse.

last, i gave up facebook for lent.  so most of these things are what i would have posted there, but i can't.  and so, instead, you get my small life blurps.  you're welcome.

Friday, March 15, 2013

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.

Saturday, March 9, 2013

small miracles.

there are moments, small brief wrinkles in this thing we call time, where one realizes they are witnessing something miraculous.  the moment a child is born.  looking back on something that very easily could've ended tragically, but didn't.
some pray for large miracles.  healing.  reconciliation with someone, that seems impossible.  conception to happen after a long stretch of infertility.  we sit at the foot of God and ask for the things we want.  often, we ask over and over in hopes that if we just repeat ourselves enough, we will be heard.  it's very similar to how my four year old interacts with me some days.
i don't often ask for huge miracles.  i have before.  and like many others, i can look back at events, things that line up, even walking out of the hospital last may with an alive little, and know that i experienced a miracle.  but, for the most part, my request are small and infrequent.
except one.  every day.  sometimes more than once in a day.  i ask.  i ask in the morning.  i sneak in after my girls are sleeping and ask at night.  i will keep asking, over and over until i get a yes.  because i want this for my little.
Jesus, please heal my little's inability to eat by mouth.  i just want this one thing for her.  i can handle deaf.  i can handle seizures.  but, i really want her to be able to eat.'
for most people, the process of eating starts with learning to breathe, suck, swallow.  shilo did that.  and then she couldn't anymore.  and if you forget how to do that, your body has a harder time with those next steps because they build on the first.
and a few nights ago, as i was rocking a little, she was sucking her tongue.  we have noticed this occasionally, and know that she did it a long time ago, before our tragic months where she lost the ability.  and when i hear it, my heart quickens, and i hold my breath.  'could this be something?  could she be relearning to suck?'  and then the next time i try to feed her nothing has changed.  i am unsure what any of it means, but because i've gotten good at being long suffering, i choose to hope.
and for the last four nights, i have tried something as she is drifting off to sleep.  something, that if she does it, would bring about hope in a bigger way.   something, that for so many parents might feel like an annoying habit to break, but to us, it is nothing short of a miracle, albeit small.
there is some chewing.  some playing, but as her eyes get heavier and heavier, i hear a sound.  a sort of smacking that can only be made by doing one thing.  sucking.  on a paci.

small miracle indeed.

Friday, March 8, 2013

clap, clap, clap, your hands.

with every kid who has ever been in my care (i used to be a daycare teacher, i have nannied, and now i have kids of my own, so there's more than you might think) i have sung this song, 'clap, clap, clap, your hands.  clap your hands together. (repeat) clap a little faster now, clap along with me.  (repeat) clap a little slower now, clap along with me. (repeat) bacy to verse one.  then you clap softer and louder.  higher and lower.  so on and so forth.
i have sung it with shilo, and taken her hands and clapped them.  but last night i spent a little bit working with her, and yelling clap at her left ear (she can hear a small amount of loud noises in that ear).  i was successful.
i have two awesome rockstar little girls.

Thursday, March 7, 2013

worth and value.

a friend sent me a link to this article the other day.  the story is of a surrogate mother who found out the baby she was carrying was going to have multiple medical needs, and the family she was carrying for wanted her to have an abortion.  she chose not to.  you'll have to read the whole thing to understand all of it.
for whatever reason, i made the huge mistake of reading some of the comments after the article.  if you chose not to do that, please DO NOT go back and read them now.  i'm pretty sure part of my heart got ripped from my chest.  the gist of most of the comments were that this surrogate mother was selfish and this child will spend her life suffering because of her.
i know that i stand on one side of a fence when it comes to life.  i believe in it.  all of it.  i believe it has value.  i believe every person has worth.  i'm also aware that there are people who believe that it should be an individuals choice.  and i think that was where a lot of the people who commented were.  however, i can't quite follow how they got from, 'it's an individuals choice' to 'she made the wrong choice.'  that seems more like you are still trying to make someone else make the same choice you would have-the very thing they are against.
and just to clear some things up, my belief in life came about before i became a christian.  my best friend had an abortion.  thirteen years later her heart still aches for that baby, and the choice she made.  this was the reason i chose to believe in life.  i have had too many conversations with her to believe that the idea of choice is one made without lifelong ramifications.
i also will put out there that my belief in life does not have me standing outside of abortion clinics picketing.  i'm not going to pro-life rallies.  i'm not condemning women who have made the heart wrenching choice to have an abortion.  i am adopting children, attempting to walk alongside single parents who made the choice of life, attempting to love and speak truth over women who hurt from their past choice, and trying to work on the social justice side.  because i think a belief in life having value, stands not just for the unborn, but also for the children who's parents need helping buying groceries,  the parents who need help paying rent to raise their child(ren), the person who is struggling with mental illness and does not have health insurance, or the means or access to the care needed to help them.  i believe all of life has value.
here in america we have a very small list of things we value.  intelligence.  beauty.  strength.  being the best.  making a lot of money/owning nice things.  if you are anything other than this, your assessment will come in as anywhere from less worthy to completely worthless.
i had a conversation with a mom the other day who's son had an assessment at school.  she was not surprised by what she found out; academics are not his greatest strength.  but she wanted to come to his defense immediately because all of the things he is great at were left out of that assessment.  sure, he may not be the next ceo of a company.  he may not be a doctor or lawyer.  but this boy lives life passionately.  his heart and compassion are unrivaled by other children his age.  he has been praying for shilo regularly for over a year now.  on his own.  but that doesn't fit into the list of things that are what gives a person worth.
i have great fear for my oldest daughter and what her future holds.  she is intelligent.  she is beautiful.  she gets told these things often.  and we try to make certain that is not what her identity is wrapped up in.  because she could end up with a brain tumor that takes away that intelligence.  and she could end up in dermal tumors, that while it doesn't take away her beauty, will make others redefine her, because she will no longer fit into the box of what we consider beauty.  even being adopted often makes others respond as if her worth is less.  this girl, she is super funny.  she has more energy than any other four year old i've ever met.  she loves to help take care of her sister.  her worth is more than any list i will ever be able to make.

and my little.  well, 92% of people who find out their carrying a child like her choose to abort.  most of the time they say things about the suffering the child would experience, and how hard their lives are.  as shilo's mama i can tell you that she has been through a lot medically.  but suffering is not a word i would use to describe her.  easy going, strong willed, funny, loving, and intelligent (even if it doesn't fit in the intelligent box that others would use) are the words that come to mind for her.  as she was lying in the hospital a year ago, with a tube down her throat, and multiple wires hooked to her, i still wouldn't have used the word suffering.  i would've said that she was a fighter.  multiple kids who have had less than her didn't make it.  and somehow, she is not only alive, but a thriving little girl who likes to drop her toys off of her high chair to see what you're going to do about it.

so what makes a person worthy of life?  who get to make that choice?  and, when, did we as a society, get to start deciding that another person is suffering? i know a lot of people who's lives don't make the list of 'valuable' above.  i have yet to meet a person who does not have worth.

Tuesday, March 5, 2013

best. papa. ever.

i'm pretty sure i married one of the most amazing men alive.  at very least, the best papa ever.  abigail will grow up with memories of her papa on the floor playing with her little characters, dollhouse dolls, and little people items...even if it is the cause of her large amount of potty and body function jokes.

and i won't go into all of everything until we know more, but we have a definitive that shilo is having seizures, and an upcoming 24 hour video eeg.  we also have an upcoming mri for big (they both saw the neurologist today).  i'm glad for all these test, we were starting to get bored with our lack of appointments and such. ;)