Monday, July 30, 2012

'i could never do what you are doing.'

the statement above is said often to the parents of a child with special needs.  i hear it a lot.  let me share my most honest response to this comment.
today shilo had an appointment with an audiologist.  we had high hopes of getting her bone conduction hearing aids today, or at very least this week.  instead i heard conflicting thoughts with what the audiologist who did her initial hearing screens told us.  an hour and a half later we walked out of the audiologist office with a hungry little girl who still can't hear.
so tonight, i'm standing in the kitchen, looking forward to our upcoming vacation.  i had hoped.  i had dreamed.  i had envisioned two little girls in the back seat, both hearing the music we are playing in the car.  a whole week, together as a family, where shilo gets to hear us talking, and we get to enjoy the fact that she can hear.
we will go on vacation, and shilo will hear none of it.  so i stood in the kitchen.  alone.  crying.  my thought: i can't do this.  ironic, huh.  me, the one who is doing it, she often feels like she can't do it.  it's too much.  the emotional pain is unreal.  the aching for my daughters is beyond words.  the appointments. wear. me. out.  the fighting for things that i shouldn't have to fight for, sitting in hospital rooms, and the day in and day out things people don't even realize take place, i can't do it.
but you know what happens.  i do it.  i don't do it because i'm super human.  i don't do it because i somehow operate at a level of amazing you can't even imagine.  i do it because she's my daughter.  i do it because my love for her far outweighs my exhaustion.  and i do it because it needs to be done.
perhaps, some days, i have to die to myself more than you do.  this doesn't make me super mom.  it just does a much better job at pointing out my ugly selfish heart that has been living for itself for so long.  it also shows how amazingly one can operate when trying to walk by the grace of God.
so the next time you are talking to a parent and you think about saying 'i could never do what you are doing,' don't say it.  because you could do it.  you would do it.  and you would stand in the kitchen at the end of the long days, and cry, and say, i can't do this.

'Whatever I have, wherever I am, I can make it through anything in the One who makes me who I am.' Phillipians 4:13  (the message)

Thursday, July 26, 2012

just the facts.

i'm pushing forward with life right now, but often feel too tired to do much thinking/typing.  so i decided to give you an exciting post where you get to learn all sorts of fun facts about our family.

*i drink a glass of chocolate milk almost ever day during nap time (i wouldn't dare give my children something so unhealthy for them)
*i drink a mcdonald's coke (large coke, no ice, in a plastic cup, not styrofoam) every day. we have told abigail she can have soda when she is thirty.
*one of our favorite family meals is macaroni with tomato juice (not pasta sauce, actual tomato juice), cottage cheese, and brussel sprouts.
*my husband is slightly obsessed with my gazpacho (cold soup).
*my 6'2" husband, and i, share a full sized bed.
*abigail thinks that ice cream trucks are 'music trucks.' the ones in our neighborhood are sketchy, and i will not be telling her otherwise.
*i have an unhealthy love for rap music.  i haven't listened to much since i've become a mama (one again, not good for my kids), but sometimes i work out to it.
*jason and i love journey.  abigail is also developing a healthy love for them.
*abigail can dance the robot and walk like an egyptian (i'm pretty certain we have succeeded as parents).
*i am shilo's favorite parent (this could be up for debate, but jason isn't here to read this right now so i'm going with it, and will accept the ramifications later).
*organizing things makes me happy.  like giddy dancing around kind of happy.
*i am afraid of stinging insects.
*jason is afraid of bats, spiders, and snakes.
*abigail is afraid of remote control vehicles.
*shilo doesn't know what fear is yet.
*i like camping.  some of that has to do with the fact that nobody will judge me for not showering regularly.
*jason and i still hold hands in public.
*we all believe french fries are best when dipped in barbeque sauce.
*sometimes, i think i deserve a reward for not saying snarky things, or becoming physically violent, when i am dealing with certain doctors and medical professionals.  a for real reward.  with money, and a free trip.
*i like my husband, and i like being married.
*i like my kids. a lot.  a lot, a lot.
*i don't like cats.  at all.
*we only have one vehicle, on purpose.
*we don't own a television.
*we don't own cell phones (my husband has a work one).
*we hate the idea of the typical american dream.
*we have less than a year before we pay off all of our consumer debt (one more student loan).
*we LOVE ice cream.
*we have our own waffle cone maker.
*we like being outdoors.
*jason doesn't like the water much, shilo doesn't seem to either.
*i love the water, and abigail is part fish.
*our family has dance parties somewhat regularly.  we turn up the music, and dance like nobody is watching.
*we have an eight year running scrabble score for jason and i.
*abigail is obsessed with veggie tales right now, particularly larry boy.
*we have some of the most amazing friends possible on earth.
*we would like to go to alaska some day.
*i worked at dairy queen in high school.
*jason worked at a local farm picking tomatoes, and melons, and possibly other stuff (i can't remember for sure.)
*i don't really like cooking that much.  i do it so my family will eat.
*i do enjoy feeding my family healthy meals.
*i know how to change my own oil.
*i can change a tire (on the interstate, in a big city, in the dark, while my child is alone in the car, and no police officers or good samaritans offer to help).
*i am extremely passionate about any sort of hatred or nonacceptance of a people group. it's unacceptable.
*my political stance is probably much different than what most people who read my blog assume (although i'm not going to tell you what it is because this isn't a political blog).  is that ambiguous enough for you?
*jason took me to look at the stars for our first date.  he also stole a rose for me.  very romantic/illegal.
*i like things to be black and white.  rules are rules.  they should be followed.
*my favorite parenting book (and the only one i would ever recommend across the board) is 'grace based parenting.'  phenomenal.  even if you aren't a christian....good thinking through what's important, and what isn't.
*i am ridiculously passionate about car seats.  i try hard not to call people who don't have their children in the correct seat.  when a friend on facebook post a picture with their kid in an incorrect seat/direction, it takes every bit of self control i have not to say anything.
*i like to sew.
*i like to crochet.
*i am tired and running out of things to say.

so there you have it.  a list of random things about us.  if you have any burning questions/things you would like to know you should ask me.  perhaps i'll do another post like this sometime. (p.s. i will not answer what my political thoughts are.  already went over that....not a political blog.)

Friday, July 20, 2012

what we signed up for.

jason and i have been talking a little over the last week about how crazy it is that we have two children with special needs.  i've been getting sainted a lot lately, 'you're so amazing' 'i don't know how you do it' 'it takes someone special' and on and on.  but really, i promise, we aren't special.  almost everyone with children would do all that they can to take care of them and give them what is best. shilo, and abigail, are our daughters.  they are not our adopted daughters, charity cases, or kids we are taking care of.
but let's back up to clear some stuff up.  when we adopted abigail, we were ambiguously 'open to children with special needs.'  nobody asked us what that meant, but if we were honest, it meant developmental delays, struggling in school, and everything else being fine. of all that abigail has had, and does have going on, asthma, and developmental delays are the only thing i can think of that would have made my list of 'things we can handle.'
when we signed up with the national down syndrome adoption network, before shilo, jason and i didn't think we wanted to do heart defects.  so we were 'open to anything' but had actually discussed the fact that we thought that might be too much.  when we got the initial 'potential birth mom' call about shilo, we were told some sort of heart defect, would't need to be repaired until later.  we talked and decided we could likely do this.  it wasn't until we were driving to meet shilo that the hospital cardiology social worker called and told us about the two defects, the immediate surgery, and the surgery later.  and while we could have still changed our minds, there is something that happens when your child is born, even if you aren't the one who gives birth.  she was our daughter, despite the fact we hadn't met her.  there was just no way we could say no.
and then if you do a little fast forward through the last eight months, the list of her 'medical' issues grows quite exponentially.
once again, we do not in any way regret either of our children.  we think they are amazing and wonderful.  but if we are honest, the things that have been handed us with both of them were not the things we thought we were getting into.  this is not a bitter statement.  it is to help people understand, we are not saints.  we are selfish people who would have picked an easier road if given the choices.  the harder things in our lives are , 'not what we signed up for,' in one sense.
what we did sign up for, was to be abigail's and shilo's parents.  and with that came a whole list of things nobody knew about.  and i think, most parents of children with special needs will tell you, that when that is what is handed to you, you have few choices.  and the one that most parents make is to jump in, head first, and do whatever you have to for your children.  this is the choice we have made.
and sometimes, when i'm holding shilo, and thinking about all the things she has going on in her little body, she smiles at me, like this, with her almond shaped eyes crinkled, and her whole body wiggling along,
all i can see is perfection.  beautiful, amazing, wonderful, perfection.
and abigail, when she dances around, with her awesome big hair, just like this, doesn't seem like a medical

case.  she doesn't even show signs of all the crazy things going on in her little body.  she is a perfect three year old, who loves music, dancing, and superheroes: the way all three year olds should.
so no, we are not saintly.  we are not amazing.  we are parents, taking care of our daughters, and doing our best to assure they get everything they need to grow, thrive, and feel loved.  because that's what most parents try to do. 


Friday, July 13, 2012

my daughter is deaf.

i mentioned before that shilo is deaf.  we have been working through the details of all of this for a ridiculous amount of time, while my daughter was left without the ability to get hearing aids quite a few months now.  so i thought i would share from the beginning of when we 'knew' and where we are going with it currently.
shilo failed her newborn abr.  this isn't completely uncommon for children with down syndrome.  so we made a mental note to get that followed up, along with lots of other things.  we were in the process of getting a referral for it (because you can't just call and say, my daughter failed this and needs retested, a doctor has to tell another doctor that) when she was admitted to riley in december, for what turned out to be congenital hypothyroidism (also common with down syndrome).
by this point, jason and i were VERY suspicious that shilo really couldn't hear.  she didn't startle.  she didn't react to her very loud sister. ever.  she didn't make any noises outside of crying.  she showed all the signs of a child who can not hear.  so we got home, went through the holidays, and were working on the referral (wrong paper sent, new one for the referral, new rules, different information needed, RIDICULOUS) when shilo was readmitted in february.
an abr is most accurate on an infant when she is sedated or under anesthesia.  shilo was intubated, and sedated for nine weeks.  and so i was all, 'hey, while we are here, just waiting on her to get well enough to have surgery, maybe we could go ahead and do another abr.'  and after asking a few different doctors i finally got one who said yes.  audiologist came and results were not surprising.  right ear had severe and profound hearing loss.  left ear had moderate to severe hearing loss.
i'll do my best to be mostly factual here, and not so ranty, but i'm likely going to rant a little.  children with down syndrome also are more likely to have fluid on their ears.  so before the audiologist were willing to give me a referral to get my daughter her much needed hearing aids, they wanted to do ANOTHER abr.  i kindly explained that this was ridiculous.  so they did another test to see if the ear drum reacts.  shilo's didn't, which they explained meant she likely had fluid on her ears.  they also explained that children with fluid on their ears don't usually have the degree of hearing loss her abr was showing.
as a mother who tries to educate herself, i also knew that the majority of children who had hearing loss due to fluid still reacted to noises.  the fluid might make things sound muffled or quieter, but someone screaming would still cause them to turn their head and look.  shilo, no response.  so i tried to have this conversation with a second audiologist and an audiology extern at the hospital.  the extern finally said to me, 'well, children who have fluid on their ears could lose hearing.  if we do tubes, then we can get an accurate view of what her hearing really is.  i think we could *both* agree that you would like your daughter's ears to be healthy.  right?'  so in my equally sing songy and condescending voice i explained that my (then) seven month old had cognitive and developmental delays, and the longer she goes without being able to hear, the more of a problem that is.
thing is, in this process, i can't just take her to get hearing aids.  she has to have a referral.  so tuesday, shilo got a g-tube, ear tubes, and had a sedated abr. again.  turns out, shilo didn't have fluid in her ears.  the reason her ear drums didn't react to the test is because something in her ears doesn't work.  she can't hear.  so much so that regular hearing aids wouldn't help her.  she will have to get hearing aids called bone conduction aids that sit behind her ears on her cochlea bone to help transmit sound waves directly to it.  and even with that her hearing will likely only be at a moderate level.
her official assessment is profound hearing loss (she is completely deaf) in her right ear, and severe in the left.  the extern who talked down to me was the one who got to come tell me after surgery all about my daughter's (lack of) hearing.  i'm trying not to stay angry at her, but i do hope that since she isn't an official audiologist yet, that she walks away from this specific case learning that sometimes, parents do know what they are talking about.
it's also been hard for some of the audiologist we have worked with to wrap their heads around all of this.  multiple ones have said, this just isn't something we ever see in down syndrome.  i think, sometimes, when your kid has a label, that doctors forget that they also are people.  yes, shilo has an extra chromosome.  she ALSO has 46 normal chromosomes.  and just because her body has lots of the features that come along with down syndrome, does not mean that everything about her is down syndrome.  shilo is not down syndrome.  she HAS down syndrome.  it does not define her.
and as far as shilo's hearing, we are doing our best to expedite the process of getting her hearing aids. we have been signing with her since she was very little, and have some awesome people through early intervention who will be coming to help us become fluent in asl.  there are aspects of it all that make us sad. but right now we are trying to focus on getting shilo what she needs.

just a little end note: i know ALL of the options for hearing aids, and cochlear implants.  please don't ask me if we are going to do implants, or tell me why we should.  don't send my you tube links to the first time some little boy heard.  we will figure out what is best for shilo, and go from there. :)  however, if you have a child with bone conduction hearing aids, i would LOVE to hear from you, ask questions, get advice, etc.

Saturday, July 7, 2012

faith and disability.

for the first time ever, i have decided to join a blog hop.  we'll see how this goes.  i thought since i am extra tired, and some of my attempts at writing come out completely incoherent, perhaps a prompt would help me out.  so i decided to join the summer disability blog hop.  the question being posed, 'How has your faith (or lack of) influenced the framework within which you view/experience disability? How has that “Faith Lens” (or lack of) affected your perspective?'

so first of all i'll start by giving a brief synopsis of what my faith is.  i became a Christian (accepted Christ as my Savior, asked Jesus into my heart, whatever) when i was 17, at the end of my senior year of high school. it was a magical experience with lights, and a trip to heaven....okay, not really.  but that was when i made the choice.  there were lots of things going on in my life right then that weren't easily dealt with.  and accepting Christ didn't make a single one of them go away.  my life didn't become sunshine and rainbows.  i didn't walk around skipping and singing kumbaya.  but i did have a newfound perspective.
over the next few years, i read lots of the Bible, and continued to work out my own salvation, and figuring out what i believed.  i went to some amazing churches.  i went to some not so amazing churches.  i learned that, apparently, a church filled with people, is also full of hypocrites.  i learned that i am a hypocrite.  and i learned that i am very thankful that my salvation is based on the grace of Jesus Christ instead of doing enough good things to make up for me being a hypocrite.
fast forward a while, and i got married to this really hot guy.  he loves Jesus too.  we talked about all kinds of things, like the fact that the Bible calls us to love the least of these, the poor, the widows, the orphans, and the oppressed.  it tells the stories time and time again of Jesus reaching out to some of the most unlikely people; prostitutes, tax collectors, and even children.  and reading this inspired us, and it also was hard to ignore.  so we flew across the ocean to africa.  so we moved into an urban neighborhood filled with urban issues, and got to know our neighbors.  we talked to drug dealers and prostitutes.  we did our best to love those around us.  and people thought we were f*cking nuts.  seriously.  we were going to get shot.  things were going to get stolen.  people were going to break into our home and rape me.  how were we going to sleep with all those car alarms and police sirens?
don't worry, we sleep fine.  well, we did until we had children.  and this too is where our faith comes into play.  both of our daughters are adopted.  we believe in life. we believe picketing abortion clinics is a waste of time.  so instead we try to love the mama's who choose life, and we want to be there to help those who choose life and aren't able to raise the child themselves. (don't worry, i'm getting to the initial question).
both of our daughters have really unique chromosomes as well.  abigail has a mutation on her 17th chromosome.  shilo has three copies of her 21st chromosome.  and quite frankly, at this point, we feel that raising children with normal chromosomes just might be one of the most boring things a person could do.
but let me get honest here too.  it has not been easy.  between my two daughters we have had five surgeries, six mri's, and we have surgery scheduled for tuesday.  my oldest daughter could be diagnosed with a tumor at any point, and it could be nothing, or it could kill her.  my youngest daughter has all but died twice now.  and the only reason that i'm still standing here is because i have faith.  i don't really buy into all the fun little sayings and things that people put out there for parents of children with special needs.  i don't think God gives special children to special people. i'm fairly certain that myth was debunked when He chose me to be abigail and shilo's mama.  i don't have it all together.  i don't have their therapies color coded and in labeled bins.  some days, i don't manage to do anything more than what i would have for typical children.  i also think it flies in the face of who i believe our God to be, 'Yahweh! Yahweh, a merciful and gracious God, slow to anger, and abundant in loving kindness and truth,' Exodus 34:6  ummm....a merciful and gracious God doesn't give children special needs.  He didn't look at abigail and shilo and decide to screw with their chromosomes.  i know, i know, then how, with my faith, did they end up with genetic disorders?  well, the best way i can state it is that we live in a fallen world.  our world is full of sin.  and the fall of man led to death, disease, and chromosomes mutating.  there are tons of more theologicalish discussions i can go into, but i'm not going to.
the other really big topic that surrounds any sort of disability, do i believe that God heals?  absolutely.  do i believe He could heal abigail and shilo?  you bet.  but let me make this really clear: i pray for God to heal abigail's and shilo's affects of their disorders.  i have never, not once, asked God to heal their chromosomal make up.  it's what makes them who they are: the shape of their eyes, their height, their intellectual make up.  i don't want different children, i just don't want them to have pain.
and under no circumstances do i think that their lack of healing is: a)caused by some sort of sin in jason and i's life. b)rest upon me having the right amount of faith to make things happen. or c) can only happen through some ultra spiritual person praying for them.  i once again could go into a big long theological thought here, but i won't.  if you are interested in hearing my beliefs on it, you can e-mail me, or listen to this sermon (on John 11) from the pastor at the church we attend.  he is spot on with where jason and i stand on the subject.there are so many things that come up about what you believe when your child has a disability.  for a lot of people, that diagnoses is a make it or break it for what they believe.  they either jump into a faith head first because that's the only thing that will get them through, or they decide that God is obviously not good, and not worthy to be trusted. 
we chose to adopt children with special needs.  it didn't really push us in either way as far as faith goes.  it has grown me, and made me really stop and read, and study, and figure out what we believe.  i won't ever be the person who tries to make someone feel better by telling them that God doesn't give you more than you can handle.  but i do believe that Christ will return.  and i believe that when He does, all of the things that are broken in the world, will be made new.  so i guess the quick answer is, my faith reminds me that my children's disabilities are not forever.