Monday, February 1, 2016

Holding hope.

'that nothing grows on
 but time still goes on
 and through each life of misery
 everybody's got a hold on hope
 it's that last thing, that's holding me.'

some days, my hope lies strictly in heaven. the knowledge that all things will be made right gets me through.  everything here seems too hard. 
some days my hope lies closer to now.  that things might not always be this hard.  that here on earth, even, I might experience great things.
some days, I pour out my hopes in words to a God I still don't understand.  I step out and take that chance that maybe this will be the time the words I speak change something. but, at very least He's listening.

everyday, in our hallway, I walk by hope.  she used to sit in our kitchen window.  then on a shelf behind our couch before we moved.  and, in the midst of all the really hard things over the past years, at some point, her hand fell off.  I glued it back on.  then, she disappeared (with some help from little) behind the couch until we moved it out.  her hand was gone.  missing.  no more.
but, that other arm, still clung tightly to the balloon with the word hope.  it was held high above her head.  like she still believed there were things to hope for.  reasons to hope.

day after day, she stands there.  atop the shelf.  beneath her another tiny sign with the word hope.  the one I found when we were waiting for Abigail.  those three hard years.  and when I walk by them, I think of my friends who recently had miscarriages, who have lost littles, or who desperately want to be parents, and aren't yet.  and I stop, and plead on their behalves.  because that is hard. so very hard. and holding onto hope during that.  yeap. just all of it is hard.

and I look up at her, right above.  my sister gave her to me when we were waiting on Abigail.  but, for some reason, she doesn't remind me of the pain of waiting.  she reminds me that even with hospital stays and looming surgeries, seizures, scoliosis, and the future of tumors, that I can still hope.  I can hope in a God who will redeem all things.  i can hope that things won't always feel like i'm in a battle.  i can hope for peace.  a little girls to walk.  to find out all of the things going on with Asher.  that big's NF will continue to stay mild.  that when we walk through hard things, our marriage will remain strong.  we will learn over and over what it means to remain faithful.

in my brokenness, missing parts of me that I've tried to glue back on in hopes that other people might not notice, i'll continue to hold up my banner of hope. 

Sunday, January 3, 2016

Public School.

Ten years ago, I laid on the floor of the spare room in our house.  Crying. Praying.  Begging.  All I wanted was to be a mother.  And we waited. And waited.  And we got the phone call. Appointments.  Ultrasounds.  Visits.  Phone calls.  A night in the hospital.  There she was.  Our big.  All round and beautiful.  We fell instantly for her.  Scooped her up and fought over who got to hold her. 
Then a diagnoses.  And hard stuff.  Handing her off to a surgeon to have the tumor removed in her leg.  Getting her back.  Watching her heal.  Rejoicing with a clear follow up.  Holding my breath with each MRI that it will be the one that gives us different news.
Becoming a big sister.  Then again.  Hospital stays for them.  And more hard stuff.
All this was filled in with books, parks, story times, friends, family, laughter, frustration, parenting failures, teaching, learning, television, bike riding, fevers, hugs, cooking, cleaning, eye rolling, life.

Seven years, and four months.  This child has been part of my every day.  Tomorrow, that changes.  I'm so excited for her.  For us. And sad.  How I will miss that child.  She's a smaller version of my personality.  Eye rolls and all.  She frustrates me like nobody else can.  And she reminds me each day of getting to become a mother.  Of my failures and my successes as a parent.
Here's to sending her out on a new adventure.

Thursday, December 31, 2015

Resolutions.

A year ago right now, I had just been discharged after a week in the hospital.  Tiny was still inpatient, but got to move into a room with me.  We were mastering breast feeding together.  It was all beautiful.  And hard. 



Now it just seems surreal.  And, I sit here tonight thinking about the past year, and all it's brought. We aren't really a family that makes resolutions.  I mostly feel like they're probably just something else for me to feel guilty about, when I inevitably fail at them. 
But, this year, it feels a little magical getting to start a new year.  Like, somehow, things from the past really may have been swept away.  All is new.
Maybe I really can put some new habits into practice.  And throw some old ones out. 

Most of them will revolve around saying things like, 'letting your children watch two episodes of sesame street because you're really tired from being up in the night with tiny, does not make you a horrible parent. you're doing great, mama!!'
And, 'be more gentle with big.  She's just a kid.  She has been through a lot in her short seven years.'

I think I can totally do these.  Maybe my resolution is really just to be kinder.  To myself.  To others.  The first one will likely cause bleed over into the second.
My other resolution is to sleep through the night.  If someone could let tiny know about that one....


Happy New Year.  May the good things of the year outweigh the not so good ones.

Thursday, November 26, 2015

dishes.

i have always hated hand washing dishes.  the standing.  the grossness of all the food scraps in the water.  the oily feel of pots and pans.  hate. it.  so when we bought our first home a little over ten years ago, i laminated a small piece of paper, and put in my wallet.  it had the daily, weekly, and monthly cost of my favorite treat.  and how much i could save up towards a dishwasher if i didn't get it.  at Christmas, i asked for money to go towards a dishwasher.  and, i got one.  it was installed.  and for ten years, it has been being loaded and unloaded.  (it turns out, i don't like dishes in general.  not just the washing them by hand thing.)
tonight, i stood in the kitchen of our new house, and washed dishes.  we no longer have a dishwasher.  we don't even have room for one.  we downsized in square footage.  we have three bedrooms now, but only one bathroom.  but, most importantly, we live in a one story house.  for four years, i have been carrying little up and down our stairs for bed, and for nap.  it's tiring with a baby.  it's exhausting with a four year old, and if you've ever carried someone who has low muscle tone, it's a whole different level of physical than a typical child.
on top of all of that, shilo didn't have access to her bedroom.  if she wanted to play with toys that were in there, she couldn't.  yes, someday she'll walk.  someday, she'll safely navigate steps.  but, for now, a one story house meets our needs much better.
as i stood washing dishes though, i thought of how backwards it must look to others.  going smaller.  and how at some time in my life, an easier way to do dishes seemed like the best thing, ever.  but, life is so much different now.  and moving tiny out of our bedroom and into his own room is great.  and watching little crawl into her room and play, and come back out.  it's enough to make me all sorts of weepy.
and to top it all off, our beautiful new home is a bungalow.  the thing we have always wanted.  beautiful woodwork.  a fun archway between the living room and dining room.  hard wood floors.  a huge front porch that will one day house a porch swing. completely refinished, recently.  everything and more than we could've hoped for when we began searching.  plus, it's only three blocks from where we used to live. 

this past few weeks have been long.  we've had multiple trips to the children's hospital, an hour away.  one for a sedated MRI, one for a kidney ultrasound and urology appointment, and one for pulmonology. we got good news.  we got not so good news.  we scheduled surgery for asher in February.  we will be referred to orthopedics for asher's scoliosis.  it's congenital.  he has a hemi-vertebrae and some misformed ribs. we will be referred to a neuro-surgeon for his lipoma at the bottom of his spinal cord.  his hydronephrosis has resolved.  both girl's lungs are great. 
a dishwasher seems so insignificant at this point in my life. 
it feels cathartic to turn on music and plunge my hands into the warm water.  it is comforting to know that there was a way for me to fix the mess that lay on the kitchen counter.  that when i finished, things would feel new. better.  controlled.

since the newest diagnoses, i've thought back over my life as a mother.  where i started.  with schedules and parenting books, and doing everything just so.  and where i am now.  my attempts in the beginning to do everything 'right' were because i believed i could control things.  if i just did everything, just so, my kids would sleep well, and eat well, and obey.  they would be smart. and healthy.  so very healthy.
but, it turns out i'm raising tiny humans.  and it's messy, and dirty, and they have genetic disorders, and brain damage, and misformed backbones.  and, there are nights i lie awake, figuring out how to fix it all.  how to go back in time and be a better mother, a better advocate, and undo the things that are broken in them.  and as i lie there, i become completely swallowed by the grief of being unable to make things easier and better for my children.
and, so, the dishes become an easy way to fix things.  to make them right.  they were once dirty, they are now clean.  and i can do it again. and again.  it's healing. so i sing along with Lauren Daigle and remember that He can make dry bones into an army.  and He can walk with me through hard things, breathing in life, and singing truth over me, much louder than the lies the enemy likes to whisper.
 

Tuesday, November 10, 2015

a one story house.

we're on a little journey here.  one where we spend a lot of time searching.  one that will hopefully end with finding.  but for now, we pick things up along the way.  one little thing here.  then another over there.  and sometimes they make lots of sense together.  and others it seems like maybe we'll end up going down lots of paths to find. 
and in this searching, Jason and I, we spend time taking notes.  and discussing those notes with doctors.  and therapist.  and each other.  and trying so hard to pull all the things together.
we knew at the beginning of these sorts of journeys, and onward, no matter how long, there is often a lot of energy focused on the fight.  fighting to make it over, across, through.  to just be heard. to figure out what's best, and do that.  to learn to live in a place of hope.  of faith.  no matter how big the piles of shit are that we just seem to always be stepping in.

today. today felt like we managed to move forward at sprint pace, but marathon distance.  our first victory of the day, a new house.  a new, one story house.  a house where I will no longer have to carry children up and down steps multiple times a day.  a house where little can crawl into her bedroom and play until her heart's content.  a house, where, in the future, tiny can do the same.  a house that will work so much better for our families needs right now. 

and then, an appointment.  I pulled up tiny's shirt and said, we have noticed his back looks weird.  i'm not going to point it out.  I just want you to look at it and see if you notice anything.  and she listened. really listened.  and looked.  and told me something I almost suspected, then pushed out of my head very quickly.
1 in 10,000.  that's the statistic for children who have congenital scoliosis.  tiny has congenital scoliosis.  we have no idea what this means down the road.  we will have some imaging done. we will see a specialist. we will do what needs to be done.  we will continue on searching for answers. 

but, somehow the fact that we got word that we got the one story house, one hour before a doctor said my ten month old has scoliosis seems like a beautiful mess.  maybe they aren't connected at all.  maybe it's purely coincidence.
then again, maybe i'll cling to my faith in a God who would make certain we had the exact right place to live, just in time to find out a little more about how important it will be for our family.
to continue to live in a place where the piles we step in often seem to grow in size and quantity on a daily basis, I have to cling to the second conclusion.  without it, this is all too much. it's too cruel.  but, when there is hope.  when there is faith.  then, can we move forward on this journey.  then, can we remember that the small things are tiny sparks of what lies ahead. of all things being new. of new bodies.  and no more brokenness.
but for now, for today, heaven showed up in a one story house.

Sunday, October 25, 2015

words. dna. anxiety.

the last post I vaguely alluded to it.  this one may not be any more specific.  we'll share more when we know more, and when we're ready.

first of all, asher is a happy, healthy, almost ten month old boy. 
but, he's also a very delayed little boy.  with more going on.  and, we haven't talked to many people about it.  for lots of reasons.  he was early. he was small.  even with putting those in the equation, things just don't add up.
so when he wakes at four a.m. to eat, for the third time that night, I nurse him, and lay there wide awake, going over every symptom, over and over and over.  I diagnose him, then undiagnose him.  I remind myself that there are millions of disorders I know nothings about.  I tell myself to sleep.  I take a deep breath and unclench my jaw.  I come downstairs and fall asleep to a television show because it makes my brain stop the cycle. 
but, then when daylight comes, i'm exhausted. and grumpy.  and not the best mom to any of my kids.  and over and over throughout the day I have to resist the urge to lay down on the couch and let the anxiety swallow me.  I want to scream, 'I can't do this.  I'm at capacity.  I can't take anything else.'

but, I make it through the day.  and the next.  and I whisper to myself, 'you can do hard things, andrea.'  I laugh.  I read books.  I sing.  I dance.  I go for a bike ride with big.  I cook meals. I apologize a million times for losing my temper, for not paying attention, and for my general disdain towards all living beings I interact with each day.

and last night, I did his dream feed, and then held him for just a few more minutes.  I rocked him as he slept, and prayed over him.  I don't have any great words to pray right now.  I don't even know what to ask for.  so I just tell Him things like, 'this is really hard' and 'for the love, please let me get a solid chunk of sleep tonight.'  And I looked at my son, and it occurred to me that every cell in his body, every copy of dna, every chromosome, God knew exactly what they look like.  He knew where mutations might have happened.  He knew the exact time they took place.  He knows what the diagnoses is going to be.
and for the first time in weeks, it felt peaceful to me.  it didn't change things right now.  but, it was comforting to think of God knowing. To picture Him sort of standing over the geneticist when they look through his blood sample trying to find the mutations. 

Tuesday is the beginning of this whole process for us.  we will see a specialist.  we will list all of our worries.  and we will begin looking for answers.  a diagnoses is just a word, in reality.  it doesn't change who our son is.  it can give us more information about him, about his needs.  about his future.  but, he will continue to be the same little boy he was the day before we have an answer.

Monday, September 21, 2015

theives.

there are some lines from a song i love that ring true, today.

'there's the presence of thieves, who only want, to rob you blind.
they steal away, innocence and peace...'

years ago, we sat in a doctor's office.  i had worried myself into feeling like we should see a geneticist.  what i had assumed was the issue, was not.  but, in some horrible way my fears were validated.  there was something more going on.  and so was the diagnoses of NF.  and the year that followed, i regret.  i regret the amount of time i focused on limitations and what if's instead of my daughter.  i regret that i became so obsessed with checking for tumors that i could no longer be the one who bathed my child.  i missed out on joy.  innocence. peace.  it was stolen from me when i focused on the thief.

then, maybe consciously, maybe not, i jumped in a second time already knowing things so that i could avoid shock.  nobody was going to get me with a 'hey, by the way, she's got this going on.'  but, we still ended up surprised.  i handled it better though.  and i didn't try to will away the delays.  i just accepted them for what they were.  sure, i would love for my stubborn little to stand up and walk already, but i'm not anxious about it.

and, today, i am fighting those thieves again.  the words on their own seem small.  there's this small thing. and that small thing.  then this.  then that.  separately, they're no big deal.  then my head goes through the list, one after another.  my heart starts pounding.  my brain whispers over and over, 'there's something more. something bigger.'  but, i fight.  i fight with all i am.  'maybe. maybe there is something more.  but, i'll worry about that on the day we know.  today, i'm going to dance.  i'm going to read stories.  i'm going to laugh at his little tongue play.  i'm going to smile at how he is able to find tags on the inside of my shirt seem when he's nursing, or on toys, or even the stroller. i won't let you take from me that which i can't get back.'

it's hard.  when you've lived in a world full of fears coming true, the thief known exactly how to get to you. he'll take today from you any way he can. 
but, i will fight.  i will fight by not reading the list of milestones he should have met.  i will fight by not comparing him to other babies his age (or younger).  i will fight by celebrating what he is doing.  i will fight by presenting my fears to the Truth, over and over.  i'll let Truth deal with it.  Truth conquers the thief over and over.  and, in the end, It will win.