Thursday, November 26, 2015


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


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.

Thursday, September 10, 2015

the return.

we have our computer back. finally.  not sure that i'll have tons of time to write, still, but at least I can post some pictures.

life is crazy here right now.  Jason is running a small business.  working 75+ hours a week.  plus he's gone a few times a week for other commitments. we are back into home schooling routine.  little's respite nurse comes on the morning that we have co-op so I only have to take big and tiny.  I still look around for my third kid around 100 times while i'm there trying to figure out which one i'm missing, and where she is.

big just turned seven.  she loves all things fairy, and frozen, and princess.  and pirate, and swords, and transformers.  she's making great strides forward in reading and math.  she's becoming less shy, and making new friends.  she doesn't let me take her picture very often, but when she does she is pretty much always making a ridiculous face of some sort. she loves helping in the kitchen and is getting really good at cutting with knives and using the microwave and stove.  she's a skilled two wheeled bike rider.  she loves helping out with her brother, and being a mother hen over both her younger siblings.


 little is about 95% potty trained.  she tells us more and more often when she needs to go. she is signing in full sentences, and using more new signs every day.  still no closer to walking, but hey, who doesn't love having an almost four year old to carry around all the time. she can climb well, so there's that, that makes our lives more adventurous.  she enjoys hitting tiny in the head, poking his eyes, grabbing his nose, and attempting to bite his fingers if he gets them anywhere close to her face.  she has also mastered climbing into the swing and bouncy seat.  she radiates joy, and is about as ornery as they come.

tiny is 8-1/2 months.  he's growing well.  loves nursing.  not so interested in table foods.  did I mention he loves nursing?  he's rolling both ways and close to sitting.  he does p.t. once a week for some delays.  he sleeps pretty well most nights.  he is still a pretty laid back little guy.  he's started having separation anxiety (which really just means, 'why is my mother not the one holding me at this very moment).  loves baths.  thinks shilo is the funniest person ever. he just sort of fell right into place in our family like he's always been there.


and me.  well, over all i'd say i'm doing well.  i'm tired. perpetually tired.  I hear that some day my children will all like sleep.  for now they tag team night and early morning waking as some sort of torture ritual so i'm too tired to say no to things I normally would. 
i'm starting to feel like i'm managing stress and anxiety better than I have since around shilo's hospital stay some time ago.  that being said, I was diagnosed with shingles yesterday.  so while I emotionally feel better, apparently the stress of a husband who's gone a lot, homeschooling, potty training, doctor's appointments, parenting, house keeping, and life in general has taken it's toll on me. 

even with all those descriptions, i'm enjoying lots of things about where we are in life right now.  so, i'll share those instead.

Thursday, July 30, 2015

a word.

On my journey of healing, and figuring out who God is I've enlisted a guide. Someone I go to every few weeks and vomit all my hurts and hard and questions.  She patiently helps me sort through my piles.
A few weeks ago I shared an image I have.  One of carrying my small baby girl into the hospital, and seeing Jesus standing at the door as I walk in alone.  I felt very abandoned in that place.  She challenged me to ask Him where He was.  So I did. And I am. And I will.
There hasn't been any lightning flashes. No huge revelations.
There have been some small glimpses. Some stories. A sermon. Things that flickered hope into hopeless.  And a word. One word that breathes it's refreshing breath on me every time I ask.  It's the same word that is the end of my thoughts when I replay Asher's birth story.
Mercy.  An act of leniency or compassion when things could've been different. Maybe should've been.
Shilo shouldn't have lived. The funeral I had planned, the songs I picked, the words that rolled around in my head, I got to tuck them all away as a painful memory. An almost. I didn't live them out.  Mercy.
Asher would not have survived until term. Only my husband and the friend who watched the girls know about the day the week before when he didn't move all morning.  And I poked and prodded and went to the doctor's office trembling.  And, the other times when I told Jason and my doctor that I didn't feel like he was growing.  But, in some crazy twist of fate, and life, I got very sick.  And I have a seven month old that I nursed and put to bed tonight. Mercy.
I doubt much in my life will ever wrap up neatly.  Those packages seem meant for others.  But, instead of packages tonight, I'm going to hold tight to the messy, perhaps too small, gift I have been given in a word.
I'll kiss my mercy.  I'll listen to them breathe.  I'll snuggle in with them. I'll lose my patience. I'll get busy. I'll forget. I'll start all over.  In the end, mercy.

Thursday, July 2, 2015

Where I've been.

I have lots of things I could write about. I miss blogging.  But, our computer is broken, and I can't bring myself to write an entire blog post via I-pad. Not only that, I can't figure out how to post pictures to my blog from it. And let's be honest, the pictures are way funner than my words.  So if you're wanting to see a small stream of what's happening, feel free to find us on Instagram as munciemenn.
Other than that, we're settled in nicely with three kiddos.  Tiny is six months.  The summer has been cold and very wet so we've mostly been watching fairy movies and signing time.  Thus far my goal of making it through the day has been successful every day. So I'd say we're hugely successful here.