Wednesday, July 31, 2013

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.

Wednesday, July 17, 2013

so. freaking. proud.

one of my fears when shilo had seizures again is that it would set us back.  it didn't.  like, at all.  home girl rocked this new skill for the first time today, and did it about five times.  i was thankful she didn't do it when i put her to bed though.



video



mama's hopeful of crawling by her second birthday....and she just might get there.  way to go little!  your perseverance and determination have gotten you far, and will continue to!!!

Saturday, July 13, 2013

friday, you suck.

yesterday, i wrote a post about my oldest daughter's ridiculous affinity for eating things she shouldn't.  like glass.  and our e.r. trip.  but wouldn't you know, if one has something, the other tries to outdo.  so yesterday was a two e.r. trip (sort of three, but not quite), one ambulance transport, mama needs a relaxing adult beverage sort of day.
child #2, aka, little, had a huge cluster of seizures.   after dinner, they started.  i called a nurse on call.  they said take her in.  the e.r. locally gave her a second med to stop the seizures, and after a bit we were discharged.  we walked out of the e.r., and shilo promptly had six seizures (this is where they sort of three comes in since we had to be re-admitted to the e.r.).  the girl is starting to make a name for herself with post-discharge seizures.
so we walk back in, they take us back, and the doctor says they are admitting.  i would have been surprised if they had kept us since they aren't equipped for things like video eeg or even kids as complex as shilo (and i say that knowing that she is not nearly as complex as many other kids i know).  so we get told we are being transferred via ambulance to our new neuro's children's hospital.  they are keeping us so they can give her another med to help stop the seizures.
while there were lots of frustrating things about this specific trip, we will focus on the good for now, including that fact that while we were at said children's hospital, we saw her actual neurologist. so we got to talk to someone who already knew her history, and my thoughts on treatment.  we increased her dose of new med, and we are now home.
i honestly don't have high hopes of this being the answer either because this is what she did on her first med: responded well for the first little bit, and then just had progressively more and more seizures until we switched meds.  my kid had around 100 seizures between 6:30 last night, and 1 a.m. this morning. it's slightly frustrating, and mostly scary to watch them as a parent; there's nothing you can do.
i'm glad it's saturday though.  i can't think of a friday that was more eventful than that one, in my entire life.  little is sleeping now, and we haven't seen any seizures since 1 a.m.  i plan on going to bed very early since we arrived at the second hospital and got settled in at 3 a.m.  and i plan on partaking of my adult beverage privelage tonight as well.

Friday, July 12, 2013

let them eat glass.

while we have spent quite a bit of time in the e.r., most of it has revolved around things like seizures, and tumors tripling in size overnight, asthma attacks, and non-stop vomiting.  i can't actually think of a time when we went for a typical kid situation.  and this morning might sort of count as that, but i'm pretty sure not many parents go for this....

abigail woke up a little earlier than she is allowed to get up.  i let her and her sister (who was also already awake) hang out in her room for about the last fifteen minutes before those magic numbers on the clock allowed her the freedom to leave her room.  she came in at the end of the fifteen minutes and told me she had broken one of the light bulbs in her strand of christmas lights.  we went downstairs and i planned to sweep it up after breakfast.
and then, during breakfast she nonchalantly says, 'i swallowed some of the light bulb.'
(i responded by laughing in dumbfoundedness and exasperation.) 'you ate the glass?'
'no.  i was chewing on the light bulb and it broke, and i swallowed some of it.'

this was accompanied by a phone call to our doctor and my husband.  jason felt similar to me, but was more on the angry side than seeing some comedy in it.  when i hung up she asked what papa had said.

'he's pretty frustrated that you ate that light bulb.'
'why?  there's tons more of them.  i only ate one.'

right.  so apparently she didn't eat all of the light bulbs, she left plenty of them up there to enjoy, so really there is no reason to be upset.  one e.r. trip, complete with x-rays, later, and we're pretty sure she'll be just fine.  you know, aside from her affinity of eating glass.

Tuesday, July 9, 2013

busting out of boxes.

it's unbelievable.  less than two months.



this little girl.  the one learning to ride her bike.


she will turn five.



and start kindergarten.



i can't believe how amazing she is.  riding her bike. tying her shoes.  reading.  writing.  counting.  playing with her sister.  being a good friend.  loving green beans, broccoli, brussel sprouts, kale, spinach, and asparagus.  taking mint and basil leaves from my garden to eat.
she's not your typical five year old.  and with each  new skill, i am reminded, that labels don't tell any sort of story about a person.  boxes can be busted out of.  and littles can grow into more than we could ever imagine.






Sunday, July 7, 2013

it happened.

dear woman standing by the bouncy house at the park,
   i saw you watching me parent.  it's been hard lately.  the days are filled with never ending battles with a four year old.  i'm not sure that i'm parenting right, or well, but i'm giving it my all.  you saw a small glimpse tonight of my four year old, but it's not who she really is as a person.  let me tell you a little about her.
   my big, as i like to call her, is very intelligent.  i am amazed at how quickly she picks things up, and how much perseverance she has when she wants to learn something.  she aspires to be a doctor or nurse when she is older.  she has both the intelligence, and the compassion it takes to be a great one.
   big is fiercely protective of her little sister.  she loves to hold her, play ball with her, and just have dance parties in the room they share.  she dreams about taking ballet with her one day, and talks about how she will help her on the stage.  she also looks forward to the day her sister can join her in other activities that she is not yet able to do.
   my big has been through a lot in the last year and a half.  thankfully she is resilient.  and while i'll never allow this to be an excuse for poor behavior, she is still working through some fear and insecurities that came from her mama being gone so much.
   but here's the most important thing for you to know.  she's four.  and for that reason, she acts like a four year old.  people are not the thirty second windows you see them in.  and calling my daughter a nig.... because she was mad that she had to get out of the bouncy house said much less about her, or her actions, than it did about you.
   i knew there would be a first time for that word.  i'm thankful my big didn't hear it.  i heard it though.  and i cried.  i cried because i will have to teach my daughter that even though she is like most other children you meet, people will blame her actions on her skin color.  being black didn't make her misbehave.  being four did.
   i will forgive you at some point.  i'm angry right now, but i will move on.  you, however, need to get to know people who look different from you.  perhaps you will find that they aren't so different after all.

-the mother, of the child, you called that ugly word.



 

Friday, July 5, 2013

a testimony.

i have wrestled hard over the last many months with why it is i feel like i do.  we've been through quite a bit in the last four years of life.  perhaps it's all just catching up to me.  either way, i had hit a place i hadn't experienced before where i questioned much.  i never felt good enough.  i never felt strong enough.  and there were days i was certain that i was the worst parent available for my two littles, and the worst wife for my husband.
and then, in a moment of desperation, and strength, i chose to ask for help.  i made a phone call, and an appointment.  i spilled my hard and ugly out for her to hear.  in a few weeks she'll listen to me again.  it was not miraculous.  i didn't walk out a new person.  but i walked out realizing something.
sometimes, real, is the most beautiful testimony one can give.  i hear stories of people healed, of lives turned around, and of hard things completely gone.  they're beautiful stories.  and as i'm laying there, at the end of the day, feeling like i'm less than, each story whispers to me, 'you don't have much to offer.'
so in my story, the hard things are still there.  broken relationships, that i have prayed for reconciliation, i have reached out my hand to try to make it happen, and yet they still leave me lying awake at night and wondering if they will ever be restored.  and perhaps the testimony will never be that of being fixed.  perhaps the testimony will be one where i admit that i have fallen short, but worked hard to live out the idea, 'if it is possible, as far as it depends on you, live at peace with everyone.'  romans 12:18.
and i will loudly declare that it's not a lack of faith that prevented healing in so many different things throughout my life.  it actually had nothing to do with me.  we live in a fallen world.  for that reason, we experience things that feel bad.  and sometimes, healing doesn't happen on this side of heaven.  and i'll take that lack of healing, and i'll use it to show that world that just like shadrach, meshach and abednego, that i believe my God can heal, but even if He doesn't, i still will not bow down to something else.  following God doesn't mean getting what we want.  it means having faith, even when things suck.
my testimony will include how very normal we are.  how, even though we have adopted two children with special needs, that at the end of the night we are still glad both of our girls are in bed and we can sit and rest.  it will include the moments i get angry and yell, and then have to come back an apologize.  it will definitely include the nights i cry because i have no idea what i'm doing, and the prayer that always follows, 'please make up for my mistakes.  there are many.'  it will be full of days where i just want to go out to eat without having to pre-blend something, pack meds, and pre-read a menu to make sure there's something my big can have with her multiple food allergies.
it will be the sort of testimony that those coming after me can read, and know, they too have much too offer.  cleaning up toys and reloading the dishwasher do have an effect on eternity, even if i have no idea what it is.  playing candy land, and watching your daughter persevere in trying to ride a bike most definitely have an effect on eternity.  tea parties and bed jumping, you got it, effect eternity.  and probably more than any of those things i just listed, the next paragraph will effect eternity.
i struggled with depression when i was in high school.  i have struggled with it quite a bit since returning home from our hospital stay a little over a year ago.  i believed that home should be easier (it wasn't), and that i should just learn to be thankful.  sometimes, even when you really love your child(ren), you still struggle. and by being brave enough to share this, i hope that somebody, somewhere, is able to realize that they don't need to wait until they are all better.
my testimony isn't about how i stepped up and did what God was calling us to, and it was amazing and beautiful, and there were rainbows always shining over our house.  mine is how my husband and i stepped out in faith, and did what God called us to, twice.  it was hard, there was ugly, and at the end of the day, we still believed God was good.  we didn't become rich.  i'm pretty sure we aren't going to be famous.  we didn't even live 'happily ever after' the way most people think that looks like.
happily ever after looks more like this:


smores.

giggles.

and snuggles.


messy living room.

messy play room.

polly pockets parked under a chair.

leaves and rocks brought in from a 'grill.'

shilo's past time while i cook.

...and while i go to the bathroom.


and what our happily ever after looks like in the kitchen.

because happily ever after is sometimes filled with tears among the laughter.  and it's always filled with undone dishes, strewn about toys, and unmade beds.

Monday, July 1, 2013

summer.

it's officially summer here.  i can tell because we've been to the splash park, the park park, riding bikes, taking walks, playing with friends, and big participated in her first vacation Bible school.  (p.s.  vacation should be taken out of there.  for a week, i had to have her up, fed, and ready, earlier than we ever are.  so it felt a little bit like the opposite of a vacation).
as a result you have no idea what has gone down with headaches, seizures, hospital follow ups, and life in general.  so here you go.
abigail's test all came back normal.  she still has occasional headaches.  so, she just has headaches.
shilo's new meds have completely rocked our world.  i will come back to this some more at the end.  however, they are working, and we are seeing some amazing improvements in a little girl who's brain is now working correctly.
the hospital that messed up has called and apologized.  twice.  once for not paging a doctor when she was seizing, and sending us to the e.r. instead.  and once for the fact that she was allowed to have seizures, uncontrolled, for six months, because messages weren't actually getting to her neurologist.  we did still switch doctors (we love her neurologist, but if he can't even get the information, that's really unsettling to me).  we saw her new doctor already, and really like her!
life in general has actually been feeling a little more normal.  less stressful.  maybe it's all the vitamin d i'm getting.  perhaps it's the fresh fruits and veggies from our garden and the farmer's market.  or maybe it's that in the past three weeks, since starting new meds shilo has started to:

sit like a champ.  she has been 'sitting' for a bit, but never well.  two days on new meds, and her sitting went to rock star status.  she's signing all sorts of things, as well as copying our signing.  she smiles more (which to be quite honest i didn't know was possible.  she's always been pretty happy/content).  she's sleeping better, and finally dropping her morning nap.  she's started rolling a ball with her sister, and handing toys when asked.  just things that are amazing.  and today, for the first time we saw her creeping forward.  there was some major cheering going on at our house.


sitting like a champ.

enjoying bubbles with her sister.


papa getting her.