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.



My drug of choice.

I took this self vow that I would live more honestly.  If someone said, 'How are you' I would respond honestly.  Most days that means, 'I'm struggling.'  I would tell people I have anxiety.  I would show people our home, even if it's messy.  I don't want it to be for pity.  It's not pitiful.  It's life, and sometimes it's really hard.
This new habit hasn't been without a lot of heartbreak.  Lots of people love the realness.  They appreciate hearing that other people are struggling.  But, some people see the opening of vulnerability as an easy in.  It's not always intentional.  But, when I share my struggles and someone responds with how it's a spiritual deficit, a parenting deficit, a spousal deficit, and just about every other area of my life, it makes one want to retreat.  Don't get me wrong.  I am deficient in all those areas.  I could make you a whole freaking list of where I fall short.  But, my hope in being real isn't to shine light on my sucking at things.  It's to shine light on how everyone feels not good enough.  And, if we can stand together and say, 'yeah, me too' our shortcomings are much less scary.  There's hope that maybe we aren't as big of failures as we sometimes feel.

This week we found out that Asher's scoliosis has gotten worse and we will begin casting to try to straighten his compensatory curve, and prevent his congenital curve from worsening as quickly to prolong surgery.  We found out that he does indeed have a bar opposite his hemi vertebra guaranteeing both that the congenital curve will get worse, and that he will need surgery to correct it at some point.  I LOVE having a definitive.  I hate what it is.
When he is casted he can not take a bath, or be in water.  I'm glad we're starting it going into the winter.  But, the boy loves baths.  The two weeks prior to casting are fall break so we're planning a trip to an indoor water park for a few days (the mid-west in October isn't conducive to outdoor water play).  We like to try to do things to balance and redeem the hard. 

I've been in avoidance mode since the appointment.  Constantly checking facebook (despite the fact that I'm trying to take a break from it), e-mail, reading articles, anything I could find to fill my mind with fluffy things.  I'm not interested in the countdown in my head.
So this evening, as I was making dinner, I wasn't that surprised to find myself fighting tears.  I know where it ends every time.  I don't know why I don't just allow myself to process it, work through it, and move forward.  Everyone in my home would benefit from me changing this habit.  I don't get much done.  I don't spend much time actually focused on my kids.  I just escape.  Distraction is my drug of choice.  It numbs things.  It's free.  Nobody else knows. 

 It, like other drugs, is temporary.  It doesn't actually change reality.  Eventually, I have to lay down in my bed, and all the things are still there, flooding my head.  Vying for my attention.  Preventing me from the escape I'm hoping for.  Just closing my eyes for some hours.  So I turn on mindless television, and fall asleep to that. 
It works for a few days.  But, at some point I'm doing something that demands me to not have a screen in front of me.  And, I lose it.  Fall apart.  I desperately clamor for a way to go back to numb.  But, it's too late.  So I wade in.  It's deep.  Thick.  Hard to make it through.  And, it's all just compounded with all the other shit that was already there.  Perhaps some day I'll be strong enough to just jump in from the beginning.  I'll join all the other brave people getting dirty.  I'm there today.  The people with me are much kinder than those voices that tell me I can escape things.  They remind me that I'm strong, and brave, and I can do hard things.  And, I can be real about how much doing hard things sucks sometimes.  This is one of those times.