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.