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.

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.

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. ;)

smart girl.

abigail now knows all of her presidents.  in order.  and not in order.  home girl is super duper smart.  the video is horrible because it's done with our webcam, but you'll get the gist (and get to see how very very high energy she is).

i mention this often, but we were told that the NF along with some other factors pretty much guarantee a learning disability if not a low i.q.  sometimes, doctors are wrong.  really, really wrong.

fighting.

parents of littles with special needs always hear, 'i don't know how you do it?!'  people seem to have this grim picture of how hard day to day life is.  and while my day to day is definitely different than it otherwise would be if my kids were typical, i can't say that i generally find that the hardest part.  here's a little story to demonstrate (this is 100% true).
jason and i decided that with shilo being deaf, and having cognitive delays, that we wanted to have signs put up near our home that said, 'deaf child area.'  i talked to our parent adviser from the deaf school to see how one goes about doing this.  she gave me the information on who i might contact.
i call the local board of works and talk to a woman.  i'm not going to rehash the whole thing, but she told me she didn't think they did things like that, and that she would pass my name and number on to her supervisor to find out for sure.  a week later, i still hadn't heard anything.  so i called again.  i talked to a different woman, who was equally as confused. she started by responding with, 'there are no signs like that,' which i patiently explained that there were, and matter of fact there is one two blocks from my house. the she told me, 'there's really no way to enforce those signs.'  i have no idea what that even meant.  it's a warning sign, to alert drivers that i have a child who can't hear them coming, if she darts into the road.  there's nothing to enforce.  and i end the conversation with the same idea.  i have the wrong department, but she'll let me know who i should contact.  so i e-mailed the supervisor.  he calls me back the next morning.  i do, indeed, have the right department.  and what he will need from me is a note from our doctor saying she is deaf (because i guess there are lots of fraudulent request for signs like this?), and for us to come to the next meeting for the board of works.  i comply to both of these things (actually our whole family went to the meeting), and then i have to stand up while he 'presents' our desire.  he is adamant that the sign not say 'deaf child at play' because that gives her permission to play in the street, but would be okay with voting on a 'deaf child' or 'deaf child area' sign.  it passed.
as this played out, and as i write this out, all i can think is, 'why do i have to fight so hard to get things that seem simple?'  i feel like a simple phone call explaining our situation, and i would have even happily complied with the note from our doctor, should have been enough to get things moving.  we live within city limits.  we pay property taxes. everything around is either rentals, empty, or empty lots. so no neighbors that would be upset.  i  just feel like this isn't something i should have had to fight for, for my daughter.
when your kids has special needs, you have to fight for a lot of stuff you shouldn't have to fight for.  specialist appointments.  hearing aids.  appropriate therapies.
and this is where i bring this around to now.  i wrote a while ago about an incident shilo had in november.  quick rundown, she woke up and was unable to hold her head up for a while, glassy eyes, lethargic.  twenty four hour hospital stay, mri, one hour eeg that showed she was at an increased risk for seizures, but didn't have any during.  follow up with neurology in march (very soon).  almost four weeks ago she had a second incident like this.  i videoed it because i knew it would not be happening by the time we got to the hospital.  i sent it to the neurologist.  i called.  every day.  for a week.  he couldn't get the video to open.  sounded like seizure activity.  i said multiple times, 'we don't care so much about the video.  we want a twenty four hour eeg.'  i heard nothing.  no call to schedule.  (i should mention that the doctor we're working with for this is NOT going to be her neurologist.  we have to go through him because he saw her inpatient.  however after her first neurology appointment, she'll officially have the same neurologist as abigail.  and we like him.)
shilo had her 15 month well check.  i asked our family doctor if we could somehow bypass neurology to get an eeg.  the test is innocuous.  it's just a bunch of probes hooked to her head, and a video camera pointed at her at all times.  not invasive.  not painful.  maybe annoying, but nothing big.  she agreed, and they worked behind the scenes.  so i got a phone call offering me a one hour, sleep deprived (bring your child in minus a nap) eeg for the day of shilo's neurology appointment.

     1.  we've already done a one hour eeg.
     2.  there is no way  that i can keep my deaf, rear facing, one year old awake on the 1-1/2 drive there.
     3.  shilo was worked in for her appointment because it's abigail's yearly nf clinic with neurology.
          i can't watch abgail and hold shilo for an eeg at the same time. not. happening.
so we said that doesn't work well, and is a waste of our time, and insurance's money.  thanks, but we want a twenty four hour one.  then this happened (pay close attention to 29 seconds, 1:16 and 1:32-also just to add to it, shilo doesn't usually have tongue protrusion, nor does she drool-both of which are happening here).

this happened off and on for around thirty minutes.  not bad enough to call an ambulance.  if i put her in the car and start driving, it will be done by the time i get to the children's hospital (or if i take her local, by the time they call me back to a room from the waiting room). i won't even share all the details of the ridiculous ten minute phone call with the neuro nurse while we were trying to figure out what to do.  i called a friend who is a doctor and just said, 'what would you do it if was your daughter?'
so we spent a couple hours in the e.r.  i'm very thankful we had the video so i wasn't just describing what was happening.  the most infuriating thing about all of this for me though, is that after her first eeg, i specifically asked the doctor who gave me results, 'did she have focal spikes?'  (these are an abnormal finding on an eeg that, while they aren't actual seizures, are pretty good indicators that they are happening).  she told me no, she just has some small finding that mean she's at an increased risk.
e.r. neurologist says to me, 'well we know she's at an increased risk because her last eeg had focal spikes and...'   wait.  what? she had multiple focal spikes on her one hour eeg.  i would have asked for a 24 hour eeg immediately if i had known that.  a doctor lied to me. about my kids test results. important ones.
we will be seeing neurology this week.  and we will be having a twenty four hour eeg.
but, here's the bottom line.  why did it take four months, large quantities of my time fighting, and me having to video my child having a seizure, for someone to listen.  do you want to know the hardest part about having a child with special needs?  it's not taking care of them.  it's fighting for every. last. thing. they. need.

winter blues.

to be honest, most day, i'm just making it.  that's all.  i have hit that wall hard, of winter blues.  and that, accompanied with being stuck at home (aside from doctors appointments, grocery shopping alone, and the occasional girls night) has made me feel like all i need to do for the next month is. get. through.
my big is a very high energy girl.  shut her in somewhere for nearly six months, and it will appear that polly pocket has been vomited everywhere in your home.  the days will also be filled with multiple breakdowns over just about every event of the day.  i begin watching the minutes until nap time, and praying for the grace to be a patient mama because i know she is just as done with all of this as i am.
my little seems not to care about ever having to leave the house again.  she's perfectly content in our little world and routine.  however, please, whatever you do, make certain that mama is always in sight.  papa's okay.  he can hang out for a minute, but what i really want is my mama.  and what mama really wants most days when papa arrives home, is to hand off both children and hide for five minutes.
there are moments of redemption.  i'm making lunch, and ask big to play with her sister in her room (because she just woke up from her morning nap, and i only have to finish cutting up this fruit) and i come up to find them both laying in her bed.  big says, 'arghhhhh matey,' and tells me that they were pretending little's bed was a pirate ship.  and my heart swells with pride at the fact that my big plays with her sister, and is less than aware of anything that might be considered a delay.
my little is making progress on sitting alone.  she has even showed both of her therapist now how she can do it for a few minutes at a time.  and being home all the time, instead of on the go, means i spend tons of time on the floor with her, practicing sitting.
this is not an easy season in our lives right now though.  and i'm never quite sure how to be honest about that.  i love my daughters, and that i get to stay home.  i'm so thankful that we haven't had any major illnesses this year, and that we are all together instead of living apart.  but days feel all the same.  i do the same things over and over again.  and my children require a lot of attention still.  maybe this is just the ply of being the parent of two young children.  maybe some of the special needs stuff factors in.
when i get out of the house, and go to story time, and play dates, and grocery shopping, all those things help me feel like our lives our pretty normal.  i don't know if they are or not, but those are all things it seems that everyone does.  but when i'm stuck at home, i feel isolated, and even more alone in the parts that are hard. i remember growing up, hearing people talk about the 'shut-ins' and praying for them in church.  i never really understood.
i get it now.  i get how hard it is to be a 'shut-in.'  to feel all alone, and unable to participate in the things that you really love, like being part of a body of believers, spending time with friends (and my children having peer interaction), and even getting to experience everyday life with your children-like grocery shopping.  i get how not ever leaving the house as a complete family-only one adult out at a time-can start to feel very hard.
i know there is an end in sight, a day when we will get to return to our activities, and enjoy life again.  the time period will be a faint memory, and the winter blues will turn to a celebration of new life in the spring.

choosing to remember.

a year ago, i was awake.  all night.  holding and swaying, singing and praying.  exhausted and frightened i held a little.  all night. last night i turned on the same playlist that i listened to then.  beautiful peaceful music played.  holding and swaying.  singing and praying.  exhausted and thankful i held a little.  she molded into the crook of my elbow because that's where she belongs.  her little eyes fluttered.  her body relaxed, her breathing became rhythmic.  

a year ago today, multiple doctors and nurses rushed in a hospital room.  they resuscitated a tiny little girl, breathing for her with an ambu, and pumping her chest with their hands to keep her heart going, and blood flowing through her little body.  they put a tube down her throat to breathe for her.  and it stayed there for a long time.  her mama sat and tried to think of words to tell a three year old about her sister dying.  there were tears.  there were doctors who seemed so heartless.  there was the constant rushing in of nurses and respiratory therapist to use the ambu again.  there was non-stop beeping.  there were lines and cords, plugs and wires.
and somewhere, although it didn't feel like it at the time, there was some small whisper of hope.  of future, life, and laughter.  of smiles some day, and milestones to meet.  of a sister who loves fiercely, a papa who swoons, and a mama who can't get enough.

the ambu was always close by, and got used quite often.

it is amazing the difference a year can make in the life of a little.  we are thankful beyond words that we have a sweet little who is still here with us.  smiling.  loving her sister.  and smitten with her mama and papa.

more sitting practice.

wearing the pirate hat her sister made her (i have no idea why it's a pirate hat).

playing with her sister.

'every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.'  james 1:17

shilo.  gift from God. one year later.