Friday, August 31, 2012

in a weird place

yesterday our family packed it up and headed back to Johns Hopkins for my little man's next pre-op appointment.

more x-rays, {and i have a secret fear that he may literally glow by the time he is done with x-rays}
more blood work
more testing

i don't know how he feels about facing all of this....again.
is it common place to him?  is he afraid?

i'm not sure.

i'm also not sure how i feel about all of this.  it's strange.  it's weird to go to an appointment with a surgeon and talk about putting your child under for hours, opening him up and adding metal bars, tweaking and adjusting as if he were a some point i felt like i was discussing an "upgrade" of some sort that could be special ordered.  only...i'm not.  this is my youngest son, and his body, and his life.  and the composure!  i have found some very odd detached space in myself where i live in the facade of calm expressions and politely answer questions and give little nods outwardly.  where i can endure the talk of what is to come without getting light-headed or panicky.  like i need to box up my boy's mommy and put her away for a few hours behind closed doors so that she can't melt down.  whew!  really, really strange.

and the difference for my son is plain.  the first surgery he had no idea what lay ahead for him.  we were able to talk about it with him often to try to "prepare" him.  this time he knows.  we aren't discussing it much.  i'm afraid that i'd just be reminding him of what is waiting for him.  it may feel like that heavy sense of dread when you know a punishment is coming your way (i.e.: wait til your father gets home...) but right now he is just in the dreadful waiting part.  things are becoming more real as we prepare now...our family is officially on "quarantine" as we try out best to keep all family members in perfect health leading up to his surgery.  mommy is forgetful and her brain isn't holding water.  mommy is forgetful and her brain isn't holding water. we are discussing what to bring, where we will stay the night before, how to best keep him occupied right up to the minute!

* aside--folks, we are not video game people at all.  therefore, our children (against their wishes) are not video game kids.  BUT.  we bought our boy a 3DS just for the waiting.  there is nothing like sitting with your child for hours in the pre-op area in a thin blue hospital gown with teddy bears on it and thick, non-slip socks and watching the anxiety and emotions play across him.  THIS is why we bought that handheld video game.  and it's the best money we ever spent:)

will you pray with me?

against complications and infection?
for doctor skill and wisdom? (my boy has a rare condition and this is sort of experimental treatment)
for peace? (for us parents, for him, for my other 2 children we will be leaving at home)
for a good outcome?

as for me, i am praying that i would be a faithful steward of what God has entrusted to me.  He has seen fit to  trust me with this child, with this experience, with some heart-wrenching, with trials of many kinds.  Oh, that i may be counted faithful in all of these things and that our little lives and experiences would bring Jesus glory and that His goodness would shine through our lives.


Laura said...

Wow - I can't imagine. But you know, you explained it so perfectly - I can feel how strange it would be to just have to compartmentalize the "truth" of what is about to happen. I will definitely pray about all those things.

Christy said...

I AM PRAYING! God has your family in the palm of HIS hand.

Katie @ minivan diva said...

Oh, Marie. Praying for you. Praying for your sons and his doctors. I can't imagine. ANd good for you for giving into the video games for him. Some rules are meant to be broken. I think this qualifies. : )

Kelly said...

OF COURSE!!! Your little guy is special to lots of people and we will be praying for your whole family during your quarantine, surgery & recovery.

Nancy said...

I hate that Levi has to go through this again. He is definitely a special little guy. On a good note, I think God is using this to turn him into an especially mature, caring, and wise little guy. I know that I'm a better person for the pain I've gone through in my life. I'm not sure I can say that all of the easy good times made me a better person. But Levi shines.