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.

Thursday, April 16, 2015

myself, when i am real.

a year ago I was starting to feel it.  the wounds were scarring over nicely, and the pain had diminished.  I could look at pictures of our past few years without crying.  I could pray.  that was a big one for me. the feeling that God had abandoned me in a hospital room for three months was fading.
but, everything backed up again with the birth of my son.  I've spent the months asking why, and knowing i'll likely never get an answer. the distance returned.  the trust diminished.  I can happily spit out the things people want to hear so they aren't uncomfortable, 'we are just so thankful that he's here and okay.'
and, it's true.  I am thankful.  but, i'm also angry.  and sad. and frustrated.  and I want more than anything to know God.  to feel Him.  to think He might be hearing me when I ask for things.  but, not just hearing me.  responding to me.  wanting to give me good things.  no more hard please.  I need a big long break from hard.
the past few weeks have been wrought with ugly parenting things with my big.  I never see them coming, and I have no idea if we are doing anything right when these things hit.  so tonight, I climbed up the ladder to her bed, and laid next to her.  I sang to her.  she sang to me.  she talked about things that seem so small from my adult world.  they're significant to her.  so I listened. 
then, she rolled over, sucked her thumb, and rubbed her lambie between her fingers.  I rubbed her back and silently thought.  or prayed.  or maybe those two things are one in the same.  I thought about how angry I am about hospital stays.  how I just keep cycling through the same things over and over.  and, maybe, she's angry about hospital stays too.  but, she's six.  and she doesn't know exactly how to say that.  so it looks different than it does for me.
I thought about how I can go to God over and over again, with my ugly thoughts, and my frustrations with Him, and how He doesn't ever seem to lose his temper.  He just lets me be angry.  and I pictured him rubbing my back as I fall asleep at the end of a day where I have spent the whole day stomping my feet and yelling at Him.  how He always seems to be there when I look back at things, right in the middle of it all, sustaining me.  and I told Him that I was trying.  trying to figure out who He was.  and that I would continue to seek, pursue, and run after Him, even on the days where i'm not sure how I feel about Him.  and I told Him that was really hard for me because I was afraid that He might abandon me.  get angry and decide i'm not worth the effort. or that He already had.
I eventually kissed big on the head and told her she was my favorite six year old in the whole world wide.  and I thanked her for singing to me.  the song she sang, was a kids song, by an artist named Justin Roberts.  lots of his stuff is really silly.  but, for some reason, she picked a song from one of his c.d.'s that is taken from old testament stories.  specifically, this song was taken from job. as if her lips were singing a soothing balm to a broken heart.

'where were you, when I laid the earth's foundation?
where were you, when I set the stars in space?
and they all sang together.
they all sang together up in space.
allelu, allelu, alleleuia.'

(if you want to hear the whole song, this is not him singing it, but it has the words with it)

someday, all things will be made right.  maybe, i'll even get to see the bigger plan that played into the last three years being hard.  but, for now, this doesn't wrap up neatly.  things are hard.  and, I don't want to act like it's all okay.  I struggle.  if you struggle too, that's okay.  if you're tired of hearing pat answers, and warding off those who blame you so that they can continue to believe that really hard things are from a lack of faith, come join me in.  it's hard here.  but, there are lots of really good days.  and laughter abounds because I use sarcasm to get through the hard ones.

Friday, March 27, 2015

what i want you to see.

last night, papa was gone for Thursday night practice.  like he is every Thursday.  I was making dinner.  tiny was sleeping.  big, little and I were in the kitchen dancing (and just to be completely honest, little was laughing at my singing).  it was a moment that I felt that, 'this is the kind of mom I pictured myself being. dancing in the kitchen while I make dinner.;
my mind quickly reminded me of all of the things I was falling short on in that moment.  my house was a wreck.  books covered the floor of the dining room.  toys all over in the den and kitchen floor.  dirty clothes on the bathroom floor.  dishes all over the counter.  both the kitchen and dining room table needed washed.  there were  multiple piles of papers in both rooms as well.  and to top it all off, my kids were going to be eating cheesy noodles (box mix macaroni and cheese, which I validate because I buy the high end organic stuff) for the fourth time this week.
later I found myself sitting on the closed toilet, nursing tiny, while little went potty, and big was swinging on her indoor swing that hangs in the bathroom doorway. 
little was doing acrobatics and signing 'let it go' in between, while big was standing on the swing and talking at me about her birthday party (that isn't for another six months) and all the things that would be happening. I was truly not taking in anything big was saying, which was causing her great frustration when she would ask a question and then have to repeat herself. also as was bound to happen, little fell off of her toilet, it flipped upside down and, hooray, she had gone potty.
it struck me that if I were to share these moments with others via some sort of social networking sight, I had two ways of presenting it.  one made me look really good.  the other made me look not so great.  neither would be a lie.
they were both true.  I was doing great.  there were things I could do better.  there was lots of fun.  there was lots of chaos. I love being a mom.  I want a break from my kids. 
there are those people who only share one half of these stories all the time.  those moms who show their pinterest projects, and smiling kids, and the dancing in the kitchen moments. clearly they have it all together, and parenting is a breeze.
then there are those who share how they can't get their kids to pick up, or eat healthy, or even to sit on the potty, yet alone pee in it and spill it everywhere.  clearly they are failing, and parenting is really hard.

i hope that my children remember and drink in the memories of dancing in the kitchen.  i also hope they remember that our house wasn't always neat.  we have fun.  we laugh.  we get frustrated and raise our voices a few levels higher than we want to.  we say sorry.  we forgive each other.  and, we do it all over the next day.  parenting is great. and hard. and great.  it's because it's full of interactions between humans.  and, if i can do anything well, it will be to teach them to give themselves grace for the moments that i might not want you to see on facebook.

Monday, March 2, 2015


i'm swimming.
most days, against the current.  and the current is strong.  and it threatens to pull me back with it.


but, I keep fighting.  kicking.  going places.  then, a day comes along.  and it threatens to not just drag me backwards, but to pull me under.  and the water from above just keeps coming.  washing over me.  leaving me breathless.

there are days that start with the continuation of processing the neuro-psych evaluation we got back about our big.  the words the doctor spoke, both gently, and encouraging, still left us unsure of how to best move forward in schooling her.  and, it looks like home is the way to go.

and a little, who's IEP is still not yet done.  and we should get services in place in time for the school year to end, and nothing to have actually ever been implemented.  all because we fought for what was best for our daughter.  and today she's sick.  and having seizures.  and incessantly asking to watch signing time. and starting to walk up the steps by herself.  and climbing onto the couch to unfold the laundry as I fold it.

and a tiny who only turns his head to the left.  so much so that he can't turn his head to the right, and the back of his head is getting a flat spot.  so we schedule an appointment for p.t.  and a follow up renal ultrasound to see if he outgrew his hydronephrosis.  and the tucking away of the anxieties about him not yet meeting any milestones, and regularly crossing his eyes.  and longing.  wanting something to feel easy. 

as the waters rush over, I hear the voices from above.  the ones that asked me while I was pregnant what I was going to do with a healthy kid, a typical kid, a normal kid, this time.  and wanting to grab them and pull them down with me.  to let them see that nothing feels normal from down here.  that once you have been here, you lay in bed at night evaluating every thing your child is, or isn't doing.

when you have been down here, you end up needing a counselor to walk you through your anxieties.  they are big, and they feel real, even when everyone else around you is telling you that everything is fine.  it doesn't feel fine. it feels hard.  and overwhelming.  and, a little bit like things aren't allowed to be easy.

from the outside,  it all appears normal though.  most of the people on the sideline just see someone swimming.  and some of them cheer loudly.  the cheering is often what keeps me from completely being swept away.  it lets me know I can do another lap.  every now and then, I even have someone who tags in for me for a while.  who takes a few laps, and lets me sit on the side, huddled under a towel, catching my breath.

tonight, i'm tired of smiling through things.  i'm tired of specialist, and therapies, and meetings, and evaluations.  i'm tired of hospital stays, and learning new diagnoses, and the fears that have taken up residence in my head.  so i'm going to choose to share those things.  i'm going to choose to be real. because today, tonight, it feels like i'm drowning.
tomorrow morning, i'll get up, crank up some music, and sing louder than the fears in my head.