Sunday, September 17, 2017

There was no healing.

We recently got the official news that Shilo will not be able to walk independently.  It wasn't a surprise.  And, we're thankful to have something concrete so that as we work to make our house as accessible as possible for her, we can keep this in mind.  The cause is likely extended intubation brain damage.  It's more complex than that, but that's the best way to explain it. 

 
 
I recently sat in on a speaker, sharing with mothers an inspirational story.  The gist of it was that her son was sick, and it took much longer than it should have to figure out the diagnoses.  By the time he was diagnosed, he was at great risk of permanent damage and death.  He spent four days in the hospital.  And, he miraculously completely recovered.  No lasting damage.  Completely back to himself.  Everyone around me had tears running down their cheeks.  All glory was given to God.  He is so very good, after all.

I remember so many times in Shilo's first year where I wondered when our happy ending was coming.  I mean, we did what we were called to.  We stepped up and adopted a child that society saw as less than.  Surely we deserved great rewards.  Certainly God would show up at any time, and prove how very proud of us He was.
But, he didn't.  There was no miraculous healing.  There were hard days and nights.  There continue to be hard days and nights.  And, to really finalize the memory of those three months inpatient, we have the daily reminder of her inability to walk. 
I'm certain no moms group will be inviting me to tell her story.  It's a story where things were hard, then got harder.  It's a story about a life of a child with a disability, that has had diagnoses upon diagnoses added to her medical files.  It's a story where God does not show up in a grandiose way.
It's also a story about a little girl that completely wrecked us.  And, continues to.  That little girl smiles through blood draws.  She hugs me every day when I pick her up from kindergarten.  And, she changes the hearts of everyone she meets.  I don't mean that lightly.  I'm convinced her smile originates in the depths of her soul, and passes joy on to everyone around her. 
 
 
I don't need a big grand healing.  I need the daily dose of grace, reminding me that He is indeed sufficient.  I need the conversation with God where I ask the hard questions and He just silently whispers to keep asking.  Even if it's for the rest of my life.  'Grace upon grace, my daughter,' he reminds me, even when there are no answers. 
And, I need to share her story.  Our family story.  About how there were hard things, then some more hard things, and currently, there are hard things.  All that we have the ability to do is walk through those.  Perhaps our story makes it much easier for others around us to relate to us.  Perhaps the hard stuff is simply a result of living in a world where things are just not perfect. Through it all,  we will continue to give all glory to God.  He is good, after all.




Friday, July 21, 2017

Posing.





These are a few pictures from our vacation that I love.  Playing in the sand. Kite flying.  Wearing her puddle jumper and goggles despite the fact that she never went anywhere deep enough to need either in the ocean.  They're real.  They make me smile as I remember how fun it was.  How relaxing it felt.

While we were there one night, a family arrived at the beach.  All of them were wearing nice clothes. The mother walked into the water, and started posing, as the father took pictures with his phone, while giving instructions of how to turn to get her hair to flow more, and her chin in just the right position. I continued to play with Abigail while taking in the family.  They did rehearsed videos of walking and holding hands, acting surprised when a shell was given, and numerous takes of each person to get just the right angle and picture.  All on cell phones-so they weren't professional pictures.  I have no idea what their reason was.  Nor, am I saying that there may not have been a legitimate reason to do this.  It just struck me as intriguing as I watched all of the other families capturing pictures as their children ran into the ocean with boogie boards, built sand castles, and looked for shells and creatures on the beach.  I couldn't figure out why they would need to work so hard to capture perfect pictures when the beach is an amazing way to make perfect memories.  The whole thing has stuck with me.

The past weeks have been filled with appointments.  Mostly for Tiny.  Although, Big's MRI and oncology follow up for her glioma was in there as well.  Overall the appointments weren't horrible.  But, we've been bombarded with information.  Some suspected.  Some a complete surprise.  And, as we officially started the process of genetic testing for Tiny today, I recalled all of the times people have said, 'well, he looks normal.' 
My thoughts skipped to the church we belong to.  It's full of people who are a hot mess (spoiler alert, all churches are).  But, they're all so willing to share their mess.  It's a beautiful image of what the body of Christ is to be.  So many places, everyone looks the same.  They talk the same.  They pepper their language with how great God is.  All the time. 
But, the body isn't made up of parts that have it all together.  It's made up of my daughter with an extra chromosome who uses a wheelchair.  It's made of people who have been addicted.  People who have had abortions.  People who hate others.  People who need glasses to see clearly.  When all those parts connect, and work together, it's just a big jumble of imperfect.  There are hard conversations about forgetting to make things accessible for people who use wheelchairs.  There are sometimes hurtful things said to one another.  Everyone shares in the mess, the same way our physical bodies sometimes have parts that don't work well with others. 
There are other places like ours.  I'm sure of it.  There are also lots of places that look like the family at the beach.  The ones who say, 'well he looks normal.'  As if saying, 'I know we are all imperfect.  But, at least we can pass for having it all together.'  It's a badge.  Only post the great pictures.  The uplifting stories.  If you share something hard in your life, make sure to follow it with, 'but, I know that God is good.'

But, we want so badly to look normal.  Churches.  Families.  Individuals.  We pose.  We take the same picture adjusting the angle over and over until we have the ones to post that looks just right.

The truth, we're all broken.  When we go to the beach, we get sand in our bathing suits.  And, if you live here for long, you are going to experience hard things that make you question things about faith, and God, and those around you.  You're going to realize that the people who try the hardest to look 'normal' are just as broken as the one who is noticeably a mess.

We're a mess.  Our beach pictures.  Our home.  Our children's chromosomes.  Our faith.  And, if sharing our journey, honestly, helps one other person be brave, it's worth it.  I have found it's much more fun to just enjoy the beach than to dress up and pose.  Sure, there's more sand, and possible sunburn.  But, the memories are pretty amazing.
 

Thursday, February 9, 2017

casting and such.


At the end of October, we took a few day family trip to Brown County state park to play at the indoor water park, and enjoy the outdoors a little.  It was our last water hurrah before tiny got casted.  I have wanted to thank the many people who helped make it possible for us to go.  We were thankful for this time together.  It turns out, it had been a long time since we had gotten to just spend time in nature as a family of five.  As little has gotten bigger, and still been unable to walk, we've stepped back from some of the things we love doing, like hiking, to find activities that work better for all of us.  It was so refreshing to get outside, and even have areas that we could use her wheelchair.  The pool was zero entry so both her and tiny could easily play independently.  There aren't often places we go as a family where it feels like everyone enjoys the activities, but this was a wonderful rare exception.
Of course, we came home, and tiny got casted a few days later.  Shilo got sick, and we finally found out that she had a parasite (where or how she got it is unclear).  Tiny got sick, and was tested for diabetes.  He did not have it, but his blood work was really wonky so we ended up being referred to endocrinology.  They did more blood work.  More wonkiness.  We go this coming week for a more precise test-and hopefully some answers.  Big had her follow up MRI and oncology appointment.  Her tumor is stable, and we get to wait six months before we have to do it again.  Little had an abnormal spinal MRI that we met with neurosurgery about, and we have two more test before we decide what to do with it from here.   And, little continues to have severe bowel issues despite the fact that all test point to the parasite being gone.  So, as always things have remained exciting in our home. 

But, the pictures from our trip are a great way of ending with the fact that our lives, despite the chaos of medical, are often a lot more like others, than not.  Thanks again to all those who helped us in many capacities to get to enjoy our few days away!
 
 
beautiful view.

water play

enjoying the ball

her snake, killer.

if you're happy and you know it.

teaching her the art of selfies.
an adventure while the littles napped.


one of my favorite moments from the trip.

swimming in the big pool.

sliding.

swinging.

more selfies.

grumpy face. 

family selfie.


the last bath before his cast. 


first cast, and elephant with a  cast.
 


 
this is their personalities.
on the way home, he fell asleep eating m&m's.  can you spot it?
second cast, done.  elephant as well.