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.

heaven.

some of these things may come across different than how i mean, but i think it's important for people to hear this.

there are lots of things about Down syndrome that have changed over the last thirty plus years.  we no longer institutionalize people with Ds.  matter of fact, lots of them are being mainstreamed in school, and some even go on to college.  there are people with Ds getting married.  the beliefs about Ds are slowly shifting, and people are learning that it is not the horrible, life sentence that people once viewed it as.
when we set out to adopt a kiddo with Ds, i was prepared to push hard, and show the world that our child could fit in with everyone else.  we would push hard in and out of therapies.  we would have the same expectations for obedience that we do with big.  we would be a family that showed the world how great Ds is.
i have had to be kicked in the gut a few times to realize these were all my thoughts and dreams.  i have had to come to accept that shilo may live with us the rest of her (or our) life.  she may have significant delays physically and be on the more extreme end of cognitive delays. please note that nowhere in that paragraph do i say that these things are true of shilo, just that i had to accept that they were possibilities.
we have no idea what the future holds for our little (or our big for that matter).  but, i have come to realize something.  this story, it's not about me.  i can kick and scream, whine and fuss (and i have), that this was not what i envisioned when i tried to be obedient to God's call.  matter of fact, i think i believed i deserved a child with Down syndrome and no other complications, to some degree; like adopting a kiddo with Ds meant that i got one of the 'easy' cases.
but shilo isn't one of the 'easy' cases.  matter of fact, she is on the more extreme end medically at this point in her life.  but, with deepest honesty, i can't imagine a more perfect little for our family.  we are all head over heals in love with this little girl.  she has revealed to me ugly parts of my heart i didn't know existed.  she has shown me  that while her 'special needs' may be glaringly obvious to outsiders, mine are there too.  i just have the opportunity to hide mine.
 for a long time, i envisioned heaven as a place where there would be no more Down syndrome.  i have to apologize for that.  i hope in heaven there is no more 'normal.'  no more sorrow over things like extra chromosomes, and no more woe is me.  because the idea of spending eternity with my little, and her not having an extra chromosome, well, that looks more like hell to me.
don't get me wrong.  i'd take away the heart surgery, the hypothyroidism, and the other medical junk faster than you can imagine.  but the Down syndrome, and even the cognitive delays, i'll leave those intact.  certainly in the garden of eden, where everything was perfect, God envisioned a beautiful little girl with almond shaped eyes, and short chubby hands.  i can't for one second believe that when He made the perfect place for mankind, that He didn't already have a plan for a person with an extra 21st chromosome.  it was the fall that lead to the medical things that can come along with it.
and perhaps, when He created the same garden, He also saw a dark skinned girl with chocolate chips everywhere, and one loan freckle in her right armpit.  and it was good.  until that fruit was eaten.  and then it became the marker for scarier things that could come.  but, when all things are made right, i hope that my big still has her chocolate chips.  and her freckles.  she wouldn't be my big without them. 

when most of us say that we long for things to be made right one day, we envision heaven being filled with people like ourselves.   i have begun to pray that heaven will be full of the beautiful differences, that we have decided are mutations.  i pray for almond shaped eyes, and low set ears.  i pray for brushfield spots and lisch nodules.  perhaps when God says He will make all things new, He is talking about the minds of those of us who believe that we are what 'being made new' will look like.