new labels.

the battles had been many that day.  i was out of patience.  my voice, my reactions, became louder, and angrier with each outburst.  this time i carried her up the steps as she flailed and screamed.  i put her in her room and shut the door.  i began to walk down the steps, sat down, and just started sobbing.
i never wanted to be a parent who yelled.  especially not as much as i do.  what had happened to me?  those first few years with her were so easy.  she was compliant.  she was loving.  and now it seems that more often than not, she is a screaming, crying, mess.  what did i do wrong?
a few minutes later i heard her door open.  she sat down next to me on the steps, and laid her head on my arm.  'sorry mama, for my fit and my bad attitude.'  that, that's the little girl i know.  the one who lives life full of passion.  the little girl who wants to be a doctor so she can help people.  the one who rushes to her sister's side as soon as anyone comes close to her, and has to know what the doctors are doing to her sister when we go to appointments.  she's in there.

in our world we know what constitutes a big deal.  we don't freak out too much.  we embrace and love quirky.  our girls are healthy.  they have disorders.  they have medical things that hang over our heads.  but, in a world full of bigger things, harder things, and scarier things, these things are very small.  it's important to know this, and to remember this.

but, also in our world, i was at a point where i felt completely at a loss for how to parent well.  the things that used to work, no longer did.  and after multiple months of battles with my big, i sent our family doctor an e-mail sharing what was going on.  she set up an appointment with a neuro-developmental doctor.  and we waited.
i researched, talked, and learned a lout about sensory integration disorder (or sensory processing disorder) in the meantime.  i filled out some paperwork through the center where big was getting speech therapy, and got a call back that she definitely met the criteria.  so i studied her more, read more, and tried to figure out her quirks.
she is a sensory seeker.  she needs to jump, chew, touch, squeeze, move, swing, anything that gives her senses lots of input.  so we have worked hard to do this.  things got better.  not great.  not perfect.  but better.
and tuesday, we saw the new doctor.  and i shared our concerns, our thoughts, our desire to help her, and us.  there was an eval before he came in to see us.  and then he sat, and listened to me for five minutes.  he was talking, looked at me, and said, 'ive been in the room for five minutes.  she hasn't stopped moving yet.  i don't doubt the sensory stuff.  the signs are there.  but, your daughter has adhd.
nothing changed from the moment before he said, until the moment after, with abigail.  she was the exact same kid.  she isn't harder now because she has a new label.  she isn't less capable of learning.  part of the reason we chose to home school her is because we knew if we sent her to kindergarten that this would come up, and we didn't want to medicate her.
but, there was that moment where things were confirmed.  and i felt a little sad for abigail.  because the label comes with a stigma.  she doesn't even know that this label exist yet. she definitely doesn't know she has this label. i hesitated to share it publicly because of the stigma.
i want to be an advocate though.  i want to advocate that my daughter's hard wiring in her brain being different does not make her defective.  it makes her creative.  energetic.  full of life.  and yes, sometimes it makes her defiant.  we know that we cannot allow the behavior issues to disrupt life everyday.  so we are implementing some changes.  we are seeking the help we need to know how to best parent her.  we are researching dietary and natural things that might help us along the way.  and, for now, we are foregoing any medicine.
we love our full of life big.  we love how much energy she brings to everything...even if papa says, 'taking a regular, smiling picture of her is like trying to take a picture of bigfoot.'

eeg and more on that mri.

so last wednesday shilo had her mri, with less than stellar results.  and this week she had a 48 hour eeg.  we had been waiting on those results as well as the mri from a year ago to compare to in hopes of learning a little more about the changes in her brain.

our (awesome, amazing, above and beyond) neurologist came to see us wednesday before discharge, and took my husband's cell phone number (since we are visiting family) so that she could call us today, the day after thanksgiving, with results of everything.
while i had no hope of that before she said she would, since it was a holiday weekend, as a parent with tons of possibilities rolling around in my head, i was beyond grateful that she said she had already planned to go in on friday, and would make it a priority.
she called at noon today.  she had everything,  aside from the mri to compare it to. as i suspected, shilo had lots of short episodes during sleep.  this means we will increase her seizure meds again and see if she doesn't start sleeping a little better.  the thing i was unsure of, perhaps her seizures were coming from the temporal lobe now, instead of the frontal lobe where it has always showed before.  but, the seizures did not change location in her brain.
so that mri.  let me start with what we know (which isn't much).  shilo's mri showed bilateral temporal lobe stenosis (scarring) and atrophy.  both of these things are really common in geriatric patients with alzheimer's.  they are also not unheard of in patients (generally teen and older)  having temporal lobe seizures, although they are almost always unilateral in this case.  but, in a two year old, well, it's just not really found.
had she been having temporal lobe seizures, there was a high possibility that she would have been recommended for a temporal lobe lobectomy.  and i don't know that, that's completely off the table.  but at this point we still have to figure out what's causing it.
so please keep praying with us for answers, and that there would be no more changes.  brains are pretty important.  and your temporal lobe takes part in lots of functions.  the idea of her little personality changing in any way is very sad.  we really like her, just the way she is.

our sweet snuggle monkey.

and, test.

so last weeks appointments are over.  abigail is now officially able to eat tree nuts and peanuts again.  matter of fact, we have nothing we have to worry about food wise.  it's weird, and i still carry the epi-pens with me.  someday i'm sure i'll be able to let go of that, but they have been a part of our 'leaving the house bag' for around four years now.

shilo's mri results were less than stellar.  we are still awaiting all the details that will be emerging over the next few weeks before we share anything big.  her neurologist is waiting on a copy of the films from her mri a year ago to compare.  she is also waiting on the results of the 48 hour eeg that will take place from tomorrow until wednesday.  while i am always hopeful they will capture something, this time it's of dire importance to figure out what to do about her abnormal mri.  so please, please, pray that they get good, clear information so we can know where to go from here.

i'll leave you with some pictures from abigail and i's date today so that she could have some mama time before i'm gone for a couple of days.  and a few of little being her silly self.

'papa, will you take a picture of our snuggles?'

snowman cookie.

drinking tea.

building with jenga blocks.

jenga blocks become props for 'little house on the prarie' play.

breaking up stir sticks for the ingalls to have a 'feast.'

'take a picture of me with the cabin we built.'

i love these hands.

'let's pretend to sleep, but don't close your eyes.'

'a perfect animated story telling face.  this was not posed.'

reading some comics.

reading a book she found.

'someone left their bookmarker in it.'

home, helping me ice our carrott cake.

how shilo helps in the kitchen.

we make tasty cream cheese icing.  also, check out the little one adoring the big in the background.

even this girl likes it.

a little night before poem.

'twas the night before appointments and all through the house, 

the parents could be seen, scurrying about
the clothes were all laid out for the morning ahead,

in hopes that they could all have a few extra minutes, to rest in bed.

the children were nestled early in their bed,

because early mornings make for grumpy heads.
papa was busy filling cars up with gas,
while mama made food to save them some cash.

papa was preparing to take big, one way,
an appointment that could make, for a great day.
a follow up from last week, nut challenge 2,

that could give us clearance to feed her cashew.

mama packing up medicine and food,
to take little in hopes of hearing something good.
her third mri, something we've gotten used to,
hours in a small room trying to entertain with peek-a-boo.

but alas, things were done, packed, ready to go,
parents went to bed, lights turned down low.
papa feel asleep, while mama laid there, alone
unable to dream, fear of the unknown.

The Kiss.

This image has been circulating my facebook news feed for a few hours.  It's the image of the Pope kissing a man.  Some of the headlines have said things like, 'Pope kisses man plagued with boils' and 'Pope embraces man with skin condition' and on and on.

He is being praised for embracing this severely disfigured man.  What if he had gotten whatever this man has?  I've seen comments about how beautiful it is that he is kissing someone who looks so repulsive. I've seen comments hoping that now this man can get the medical treatment he needs to get rid of whatever that is all over him.




This image is one of me kissing my big.  I do it lots and lots of times.  Every day.  I also pray for her.  I touch her without worrying about catching anything.  It just doesn't seem like that big of a deal right.  Nothing like what the Pope did by touching this man.
This man, he has Neurofibromatosis 1. It's the exact same genetic disorder that my daughter has.  No, she is not covered in dermal fibromas like this man.  Yet.  But, should that day come, I will not hesitate to embrace her, kiss her on the head, and pray for her.

the sound of joy.

after being stuck in construction traffic for over an hour we stopped for dinner.  the girls were restless from sitting in their seats for so long.  jason and i were tired from a weekend away from home and our own bed.  we sat at the table working hard to not let our exhaustion and frustrations spill over into our parenting.  i colored pictures with abigail, and we signed with shilo while she nibbled on crackers (and spit them back out).  at the end of the meal, i held shilo on my lap, and abigail tickled her, and did her usual silly antics to try to make her laugh.  jason and i were both smiling and enjoying watching our girls interact.
but all the time we were sitting there, i could feel it.  i'm mostly used to stares at this point.  our family causes people to do double takes, likely because they are just trying to figure it out.  adoption?  two different dads?  what's going on here?  and does that little one have Down syndrome?  i get it.  we stick out a bit.  but the woman at the table behind us was flat out staring.  not occasional glances.  not the awkward look away when she notices you noticing her.  staring.  and for a moment, i wondered if abigail was being too loud.
but, she wasn't.  she was being joyful.   i wanted to share our story with her.  i wanted to tell her how we almost lost our little, twice, and that i can't help but be filled with amazement at the fact that she's still here.  i wanted to tell her that abigail had every reason in the world to act jealous of her sister.  but instead, she loves her.  and the thought crossed my mind.

this morning, i got up with little at 5:30.  seizing and vomiting.  then smiling.  then some more seizing and vomiting.  then laying in my arms and smiling up at me.  two doses of diastat.  sleeping.  smiling.  at some point, i became worried that she also hadn't peed since 6:30 last night.  and as 9:00, then 10:00 passed, and she still didn't go, i knew i had to call the doctor.
so, a trip to the doctor, a blood draw, an x-ray, and an ultrasound of kidneys and bladder.  she smiled at the ultrasound tech.  she commented on how amazing it was that a little girl that had, had such a rough day could still smile.  and the thought crossed my mind again.

joy can interrupt the longest of days.  but it doesn't generally whisper.  joy is loud.

eating.

i'm going to share the complete back story up until now of shilo, and eating.  i may cry as i type this.  

lots of children with Down syndrome, actually lots of children with low muscle tone for any reason, have initial swallow studies.  these determine whether a child, swallows safely, or if he or she aspirates.  shilo had her first swallow study at some point during the fifteen day stay at birth.  she passed it with flying colors.  we were elated to not have to thicken her bottle since we had been down the aspirating/thickening road with abigail already.

shilo taking her first bottle at a few days old.

at one month old, shilo had become incredibly lethargic.  she couldn't stay awake to eat at all.  i knew she needed an ng tube, but we also had to figure out why she was so tired.  this was our one week hospital stay in december of 2011.  we found out she had hypothyroidism.  she had dropped from 4 lbs 15 oz at birth to 4 lbs 4 oz at one month old.  so we came home after a week with an ng tube, and on formula mixed to have higher calorie content.  we would bottle feed her for thirty minutes, and whatever she didn't take got pushed through the tube.

shilo with her ng tube and oxygen weighing just a little over 4 lbs.

we kept the tube in for about six weeks, until i finally stopped obsessing over the calorie count that the doctors were pushing us to get in her, and decided that since she was growing, i could take the tube out. while i still had a doctor who wasn't happy about it, i refused to obsess since it was likely she wouldn't grow well until after her heart was repaired.
we had that tube out from january until the end of february when she got sick and was hospitalized for three months.  most of you already know that story, but if not you can start here and read through it all.  we were in the hospital for about twenty four hours before they had to intubate shilo.
we ended up spending 13 weeks inpatient.  nine weeks of that, shilo was intubated, with a vent breathing for her.  so for nine weeks she had a tube in her throat.  she didn't suck.  she didn't swallow.  she just layed there, sedated.

our very sick little.

during that time period, shilo had a procedure called a barium enema, followed by a suction rectal biopsy.  the ins and outs of that aren't important so much as knowing that she had an allergic reaction to...something. and the best guess anyone had (although i don't completely buy it) was that it was barium.  barium, is also the substance they use in a swallow study.
so, after she was extubated, nobody was comfortable doing a swallow study.  we had a speech therapist come in the hospital, and help us get started in trying to get her to take a bottle again, but we were mostly on our own.  so by this point, shilo had no idea how to suck on anything.  she also no longer had a swallow reflex.  she was fine with the bottle being in her mouth, she just didn't know what to do with it.  she had forgotten during that nine weeks how to use her mouth muscles.
so, once again, we came home with an ng tube, until we were far enough out from heart surgery that they could place a g-tube.  the next six weeks between home, and the g-tube surgery are all sort of blurry.  i had just lived in the hospital for three months.  i was depressed, had huge anxiety issues, and was caring for a medically fragile kid along with my oldest daughter-whom was readjusting to expectations after three months of only seeing me on weekends.
all that to say, i don't remember exactly when it started, or when it got worse, but at some point, shilo began vomiting.  like projectile, not spit up.  a lot.  upward of twenty times a day most days.  if you take a kid who has forgotten how to use her mouth, and then throw in her only association with her mouth being vomiting, well, she's not interested in eating.
at some point, i accepted that she would never take a bottle again.  from july of 2012 when her tube was placed, until her first birthday, we dealt with puke.  all the time.  she was hooked to her feed pump most of the day because i would have to pause her feeds every time she puked.  there was no rhyme or reason.  sometimes she would puke after 10ml (1/3 of an ounce).  sometimes she wouldn't puke until she was two ounces in.  we tried different gerd medicines.  we tried apple cider vinegar.  it just didn't matter what we did.  she puked.  except at night time.  she never puked at night time.
once she was old enough, i did start trying with things like purees, puffs, and so on.  occasionally we got what we thought was a swallow.  she liked to try foods.  it was just a matter of figuring out how to swallow them.
in moments of 'mama can't take any more puking' desperation, i had searched the internet for ways to make it stop.  i came across something called a 'blenderized diet.'  essentially, all it was, was feeding a tubie real food, blended, then pushed through the tube.  and every account i read said things like, 'my kid stopped puking' and ' my kid was no longer constipated.'
so after her first birthday, we transitioned.  it was truly a miracle for me.  my kid stopped puking.  immediately.  she came off of oxygen.  she was no longer constipated.  her coloring changed from pale, to a healthy pinkish.  she started rolling over.  it was amazing the difference it made.
i had also heard that switching to real food often made children more interested in eating.  and it seemed to coincide.  she would occasionally swallow a puff, or a small piece of meat. but then i had multiple people tell me how risky it was to feed her that stuff.  and so i stopped.  and she completely stopped swallowing anything.  we even did a few hunger trials (not giving her food through her tube to invoke the feeling of hunger).
i tried a feeding therapist an hour and a half away.  after one time i decided not to go back.  everyone said the same things.  'she has to be able to swallow because she doesn't drool.'  'we aren't comfortable doing a swallow study because of the possibility of an allergy.'  'we're just going to keep doing these things that you've already been doing.'  'we can't do intense hunger trials because she is on diuretics still.'
i gave up trying.  we still gave her taste of things all the time.  but i quit all the things everyone told me to do. she continued to get speech through early intervention.
recently though, she came off of her last two heart meds.  and so i began researching again.  i came across a blog of a parent who did child lead weaning methods with the tube.  it's an intense thing to do, because you withhold food from your child so that they experience hunger, and are willing to attempt to eat.  i have been trying to have conversations with a few different specialist about it.  i'm working hard to get people on board, because we are going to do this.
shilo, is interested in eating.  we always feed her, her blend while we are eating.  we let her try what we are having.  but not until i finally decided to go for it last night did i realize that we probably aren't as far off from the goal of being able to eat orally as i had originally thought.
i have so many regrets when it comes to feeding stuff with shilo.  i wish that i had known to get a therapist to work solely on feeding as soon as we got home from the hospital.  i wish i had kept giving her the bigger chunks that she liked, and swallowed, instead of being scared.  i wish i had started giving her real food through her tube earlier to stop the puking.  but, at the end of the day, i can't change those things.
this, this made me feel like i might just be able to win this one though.  and, like so many things with shilo, i have learned to stick to my instincts about things instead of relying so much on the experts.  medicine is a practice.  and i know my girl much better than any of her specialist ever will.

grace.

i go through these periods where i become sort of stuck on one idea or concept.  what does that really mean?  what does that look like when done right?  right now, it's the idea of what grace really is: especially in relation to who God is, and how He offers grace to all of us.
so i've been reading, and just reminding myself over and over all day, for me, for abigail, for jason, for the strangers who say things to me that make me want to lose my mind:  grace.  grace.
i don't believe that grace means that disobedience gets a free pass.  instead, i think that when my big gets in trouble, and has to sit out playing with friends, i can hold her and tell her i'm sad, too, that she doesn't get to play.
and grace doesn't mean that when i lose my temper with abigail i don't need to try to reconcile with her. i need to apologize.  and then i need to forgive myself and move on.  because dwelling on my mistakes is not grace.
in reading lots of verses on grace the one that stuck out to me is 'when sin increased, grace increased all the more' (Romans 5:20).  i've been thinking through this and what it means.  and i quickly looked around at the church body i belong to, and felt it.
i love my church. it is full of a very diverse group of people sunday morning.  black and white.  young and old.  recovering addicts, people with histories of felonies, middle class, upper class, and the not so middle or upper class.  but, the thing i love the most, is that every person there seems to outwardly live their own mess.  i'm not talking about walking around bragging about the things we do that we shouldn't.  i'm talking about people who know each others struggles.  people who are honest and say, 'i've started drinking again, and got pulled over for a dui.  i need some prayer.  some love.  some help.'
but, the biggest, and greatest thing about our church is that with every ounce of my being, i can feel the grace. i think the 'sin abounding' thing isn't meant to be taken as increasing your sin.  i think, as i look around, the places where grace abounds more, are those places that are full of real people. honest about sin.  spilling it out abundantly.
and when i am in a place where grace abounds, it is like a fog that rolls in and out, around and through, taking with it the sin part and leaving behind only the grace.  the sun shining down burning off the sin making grace glitter and illuminate on each person-like the dew that's left on the grass after a fog.
i just have to take my shoes off and walk around on it.  to feel it.  i have to bend down and look closely at the way the light reflects off of each drop.  and i have to try to take pictures of it, zoomed way in, as to show every detail.  to know, for myself, that the beauty i'm experiencing is real.  is there anything, so marvelous, so remarkable as grace.
as i've searched, and searched, i've read through story after story that tries hard to explain grace.  but, alas, they do it know justice.  because the moment i think i might know it, something bigger and more beautiful takes place.  and i have to continue to search, and pursue.  hoping my journey leaves those around me being touched by the overflow of grace i'm discovering.

for from His fullness we have all received, grace upon grace.   John 1:16

long hospital stays.

i learned today of a friend of a friend who's settling in for a long hospital stay with their little.  while the situation is different than ours was, someone asked if i had any advice for a long stay.  i started to respond, but then realized i was writing a whole book.  so i thought i would offer it up in a blog post.  hopefully it will be helpful to her, but also to others who might come here.

so my two big things i heard a lot while we were inpatient, both from nurses and other parents were:
1) make sure to take care of yourself.
2) be strong for your little one.

here are my thoughts on that....

1)feel free to not get enough sleep because you want to sit and hold your baby.  feel free to sleep in the room because she's had a bad day and you want to be near her.  while it's important to take care of yourself, most of the people telling you that have never been where you are.  so feel free to figure out what works best for you.  while our little was intubated i got eight hours of sleep at night and a shower every morning.  i felt so guilty i wanted to puke most nights leaving the hospital to go stay at the ronald mcdonald house.  once she was extubated, i stayed in her room and went to the rmh to shower, eat, and take a little break here and there.  i slept there on weekends while jason stayed at the hospital.
so yes, it's important to try to eat, shower, and sleep.  however, the reason you are in the hospital is because you are taking care of your little.  so if things fall by the wayside, or you (like me) spend large quantities of time eating chips and drinking soda-when you get home you will likely go back to eating healthy.

2)feel free to lose it as much as you need to.  cry.  your baby doesn't understand you being strong or not.  and strength does not come from sitting in a room day in and day out with a sick baby and not crying.  i cried in the shower.  i went and ran up as many flights of steps as i could, then just sat and sobbed.  i cried while i ate alone in the rmh (others around me were a little uncomfortable the few times i did this).  i cried while i sat in shilo's hospital room.  if you have an older child, it's okay to cry too.  abigail saw me cry many times.  and we talked about how emotions are a good thing.

some other things i found helpful.

  if you usually have to pay for parking, figure out if there's a way to get it reduced, free, or a parking pass.  also, if you are paying for gas, talk to the social workers about help with that.

take as many free meals as you can get-gift cards, other people offering to bring you food, etc..  while our daughter had state insurance so we didn't have to pay for the actual hospital stay, eating, buying toiletries from the hospital (we only have one car and my husband had it), got expensive.  and while the rmh meals were great, there wasn't always one available, and some nights they were things i couldn't bring myself to eat, even for free. ;)

be honest about what you need.  if someone asks what you need, and what you need is someone to do your laundry, then hand it to them.  i had a few friends of  friends who wanted to help if they could, and i handed them a load of laundry, dirty underwear and all, and let them wash them.  it was a huge help for me time wise (i didn't want to take hours sitting in the rmh washing laundry).  even others cleaning your house, mowing your yard, so on and so forth.  people want to help, and they often don't know how.

don't be afraid to be the 'crazy parent.'  i went toe to toe with the doctors over different things many times.  by the end of our stay, they all respected me, and knew that i was informed about my kid.  on the flip side, the residual guilt i have over a few things are the ones that i didn't fight when i felt like i should have, and they turned out sucking for my kid.
that will lead into, do your best to let go of guilt day to day.  talk to a counselor if you need to.  there are social workers on staff that can help you as well.  and there are often patient advocates that can help you out as well.  don't feel silly talking to them.  it's their job.  and it's okay to need emotional help getting through something that's pretty hard.

some nice things to keep on hand:
lotion, lip balm, and nasal spray.  hospital=the driest air you've ever experienced.

stretch pants.  you can sleep in them, then wear them all day.  i find that even in my short stay i tend to change shape a little while living in a hospital.  so the stretch pants do a nice job accommodating my changing waist line.

cash.  quarters.  while most places take debit cards now, it's handy for the 10 p.m. vending machine runs because you missed dinner, or the deliveries because the rmh doesn't have a meal that night.

your own pillow from home (although i would leave this at the rmh.  i am a little paranoid of hospital germs coming home).

a blanket for the room that you don't mind throwing away when you leave.  the rooms are often cold. and then there's the germ factor of it touching the floor, or if the cleaners accidentally throw it in with the laundry, you don't want to be bummed that you will never see it again.

social media access.  this was important for me to feel connected, and keep people up to date.  i also appreciated being able to skype with my husband and big.

books, a kindle, a nook, whatever you do to pass your time with reading.  crafty material if you want crafts.  i made flowers to decorate shilo's bed, and i hung hearts from her ceiling and all over her walls.  she had the coolest room around.  i also made hair bows for her and abigail.

movies/access to netflix/music etc.  it helps pass the time.

if your kiddo can be dressed, button front pajamas or clothes (not over the head) so that tubes and wires can still be easily accessed, and your kid looks cute.  if they are hanging out in a diaper, baby legs, socks, and hair bows are fun ways to help you feel like you are still taking part in dressing them.


lastly, the best thing i did while i was there, was hang up pictures.  there was a picture on shilo's bed of her smiling.  it really did help the doctors who came in to see that she was a happy healthy little girl, who happened to be sick and in the hospital at the moment.  i also hung up some family pictures both for me, and for others to realize that while they might have been 'doing their job' this was my life.  and this is my daughter. and there are people at home that we are missing, and that are missing us.

if you do nothing else from this list, please do the pictures.

also, if you want to read about our 96 day hospital stay, it starts here.  and there is a happy ending.  it looks like this.





praying for all of those families in a hospital tonight.

love.

i can handle seizures like a pro.  when my big spikes a fever of 105 (which isn't completely uncommon when she is sick), i know ibuprofen and thirty minutes will work wonders.
but my little with a fever strikes fear in my heart like little else can.  there's words that dance around in there. taunting me.  

down syndrome.  somethings that isn't that big of a deal for us.  an extra copy of her twenty first chromosome. there are these things though.  these 'more likely' things that come along with that extra copy.  and those are the words that live in the recesses of my mind.
that is, until i pick her up, and she's warm. feverish warm.  and then they sprint forward causing my heart to beat faster, and my memory to remind me just how close we have come to loosing her.  they carry with them names of other brave warriors.

sometimes i hold her, and a song comes on, and i'm reminded how it was a song i had planned to use for her funeral.  because i thought there would be one.  and i thank God, over and over that there wasn't.  and then i pray, and beg, that He would let me raise both of my girls.  i love them.  i love being with them.  there is joy in there being.
so i rock little.  tears fall down my cheeks. they are being bottled, like so many before.  how is it, that i can love one so much?  

 
and i know, without a shadow of a doubt, that i would do it all again.  no matter how hard one tries, you will fall.  hard.  deep.  and you will allow your heart to get broken, if need be. love never fails.

help with the dishes.

but a moment.

i could feel it.  pressing in.  pushing.  taking.  i felt the urgency to take it all in quickly.  soak up every last second.  swallow the joy down deep.  drink in the laughter.

time.  it seems to constantly steal my babies from me somehow.  and there are days i can feel the urgency of it.  i can hear it yelling, 'pay attention, tomorrow they will be bigger.  older.  different.'  and i slow down.  i sit. 

 i stare.  i click over and over, trying to capture time.  my heart opens up and tries hard to drink deep, and swallow the love of the moment.

fix you.

these words have been going through my head today after a conversation i had this morning.  they are from the song 'fix you' by coldplay:

   'when you try your best but you don't succeed.

    when you get what you want but not what you need...
    ...and the tears come streaming down your face.
    when you lose something you can't replace...
    ...and i will try to fix you.'

those are the specific words from the song that apply to this situation.

so here's the scene-with my thought process interjected. i STILL suck at knowing what to say in these situations and to these questions.  mostly because lots of them actually sting so much that no matter how many times i've heard it, it catches me off guard.

sitting with another mom who i see somewhat regularly at a play time event i go to locally.  she is asking some questions about shilo, and her feeding tube.  somehow formula comes up which leads to a discussion on the fact that both of my girls were adopted.  i will admit that i'm always surprised when people are surprised by this.  anyway here's the brief of how it went.

'how old were they when you got them.'
'i was in the room when abigail was born, and we met shilo when she was four days.'
'you were in the room when abigail was born?  didn't her mom want her?'
i come close to tears every time someone asks this question.  'want her?'  of course she wanted her.  she wanted her, and she wanted what she believed to be best for her at that time.  so she asked jason and i to parent her.  my actual response.
'yes, she wanted her.  and she knew she couldn't take care of her like she wanted to.  so she placed her with us.'
'do you still see her.'
'yes.'
'and that's fine?  i mean it works.'
'yes.'
'and shilo was four days when you met her.'
'yes.  we found out about her after she was born. her mom had planned to place before that, but one family backed out, and she went into labor early.'
'did you know she was going to have Down syndrome.'
'yes. we intentionally set out to adopt a child with Down syndrome.'
(five minutes of how awesome that is, and how very hard that must be-countered with my go to of how not awesome it is, and how not hard it is).

'so do you want to have kids of your own?'
'well, these are my own.  but my husband and i don't care if we get pregnant or not.'
'you still could.  you are young.'
'i'm 31 and we've been married for nine years.  it seems unlikely at this point.

this is the point where things go from awkward to the feeling that others see me, and our family as something to be fixed. the next few minutes are spent telling me how i'm still young,and i could still have kids of my own.  then the stories start in on other people she knew who were married 800 years and then they got pregnant, and so on and so forth.  it's this entourage of how everything is going to be okay, we will be fixed when we just have 'a child of our own.'
it's the idea that we tried, and we didn't succeed.  we got what we wanted (children) but not what we needed (biological children).  we obviously spend our days crying and greiving because we haven't gotten pregnant, and we feel like we've lost this amazing universal experience that can't be replaced-even with the second rate choice of adoption.  so of course, along comes the world with all of their ideas, suggestions, and so on, on ways we might be able to become 'real parents' someday.

we're not broken.  we aren't sad that our family of four came to be because of adoption.  they aren't a second choice parenting option.  i wish i had the ability in these situations to say what i really mean.  but, i'm often working hard to keep my emotions in check, and don't get out that we are more than content with where we are.  maybe, just maybe, we aren't missing out on the awesome experience of being biological parents.  maybe you are missing out on the incredible experience of getting to adopt.  i mean, our girls' stories are way better than birth stories, in my opinion. or, perhaps, families are formed in lots of different ways, and we can just celebrate that instead of viewing our way as the only logical way anyone would ever want to have children.

at very least, please, stop trying to fix us.  we're pretty happy with what we have.

    

showing up.

it had been a long day.  i was tired from parenting and battles.  tired of the mundane things i do over and over every day.  i just wanted to get out.  so when jason arrived home, i got on my bike and rode until i couldn't anymore.  i pulled over on the trail and sat by the river.
my mind went over the past couple years, as it does often.  it went over the joys.  it went over the hard.  and it arrived in the same spot it always does.  God, where are you?  i feel like we were obedient to what you called us to.  i don't need a pat on the back, or an award.  but, i feel like you handed us this really hard lot in life, and then ran the other direction.
more specifically, i feel like that day, the one where we entered the hospital and didn't leave for three months, that you stopped at the doors to the hospital and waved at me as i walked into the hardest and most difficult things in my life.
tears welled up in my eyes, as they often do.  i don't share this part of my journey with many.  only the select few closest to me.  i don't want people to read into this that i regret our daughter.  i don't.  i don't want people to read into this that shilo is somehow a burden.  she is not.  all this is, is a wrestling match between me and God.  and it always ends the same way.
'God, if you are listening, if you care, PLEASE show up.  i don't care how.  i don't care where.  i just need to know you are still walking this with me.  i believe.  please help my unbelief.'

i hopped back on my bike and rode home.  i felt a little better.  when i arrived i was greeted by hugs and happy faces from two little girls, and supper waiting on me from my husband.  i sat down to eat, and jason came in and handed me my kindle.  he had no idea what i had just prayed (or that i had been praying that same thing over and over for months).
'check your e-mail.'
'why?'
'you should just check it.'
he smiled and walked away.  i pulled it up as i placed a fork full of food in my mouth.  i stopped chewing, and tears streamed down my face.  there, before me, in my e-mail was the most gracious offer we had ever recieved.

'I know it's not simple for you guys to leave your girls, but I wanted to let you know we'd love to send you away to wherever you want to go for as long as you feel comfortable being gone this year or next.  Totally an open invitation, just let me know when you decide is a good time and your dream vacation.'

while we have no idea when or where this will take place, i am certain that God has heard me.  things aren't perfect still, but it's nice to feel like i'm not walking this alone.

        



        

shilo.

a video of some of our little's signs, as well as her being her very usual active self (i.e. a black eye (you can see in the video) and fat lip all in the same week). there's also some awesome crazy post bath hair, and she has a cold so her mouth is hanging open through most of it.
she can't yet crawl, but she can get where she wants to go, and get into what she wants to...the video ends when she decides to try to go for some electrical cords.

first day.

awesome first day outfit and smile.

working on math.

plenty of time to play with her sister.

and cook herself something yummy.

reading book.

done.

i must admit, i have been super nervous to see what our home school days would look like.  i'm certain that day one is not a good indicator of what every day will look like.  i'm also certain that we have made the best choice for our big.  she has lots of energy.  we had plenty of time to take breaks between subjects, eat lunch, play with her sister, and still get all of our work done.
i'm really excited to see what our year holds, and to watch my big learn all sorts of new things.  i'm also reminded just how much i love teaching my daughter.

*disclaimer* we did more than just math and reading.  that was all i took pictures of.

things that are hard.

my writing on here has slowed down greatly.  it takes every last ounce of emotional energy to get through my days quite often right now.  i rarely want to talk about the really hard things of my life.  i'm afraid.  i'm afraid someone will read it and take away things i didn't say, and didn't mean. i'm afraid that someone will come here and decide that parenting children with special needs really is as hard as they thought it might be.
i'm reminded though, that sometimes, truth needs to be told.  hard needs to be shared.  and people will relate more than i could imagine.  so here goes.
first of all, i imagine that when i said things have been draining, you thought it might have to do with this pretty face.

and if you did, you are wrong.  while little comes with her own set of things that might seem like extra work, it is just the norm for us at this point.  plus, she is making huge strides forward developmentally, signing, and overall, is just a pretty easy going girl.

this girly, the one drawing with chalk, she's the one that sends me heart racing.  i lose sleep.  i shed tears.  i feel like perhaps i don't parent that well.  things have been tough.  i've been hesitant to talk about it, because it makes me feel like i'm failing.  the times i've tried to share, it gets written off.  'oh all kids go through a stage like that.'  or 'she's just testing the boundaries.'
but it's bigger than that.  jason and i have talked it to pieces.  and then, we decided we had to have help.  i can't spend hours every day just trying to keep her from falling apart, or eating something she shouldn't.  no, something bigger has to happen.
and so we await more appointments.  and we pray for answers.  and i fear the answers that may come.  but in the end, i need help.  and she needs help.  and our family will function much better if we know.
so please pray.  i am broken.  some days i see small glimpses of a little girl i used to know.  other days i wonder where she is, and if she will ever return.  i fear that NF has taken part of her.