Time Out

I hit a pretty big low a few weeks ago after a consult with the neurosurgeon at the children’s hospital.  After he left the room and we were loading our little pod into strollers and carriers I asked Mike to head to the car without me.  I sat in the cold sterile room and just cried.  And cried.  My body was finally doing what my hopefully heart and optimistic mind wouldn’t do. It broke down.  Because it was time.  And there wasn’t a bright side to this meeting. 

As I walked to the car and we rode home in silence the phrases of our consult kept replaying in my head. 

Quarterly Botox injections is the only treatment available // Not FDA approved so we use an off-label // We’ve taken this poison and harnessed it for good! (with excited smile) // He won’t ever walk without it // Rarely any side effects, but if he has any sign of respiratory distress go to the ER immediately // Families line up for this like clockwork every three months (insurance won’t approve it any sooner), they just love the function it allows their children to have // When it wears off around 8-12 weeks the muscles return to the previous state // In 15 years of injecting Botox for muscle relaxation I’ve never seen a child maintain the stretch they had after the neurotoxin wears off // When his muscles build up a tolerance we will play with the numbers and up the dose // We need to reintroduce oral muscle relaxers to control his tight tone // When he’s old enough we can insert a pump in his tummy to disperse muscle relaxers into his spine // Around age 7 he will be a great candidate for neurosurgery //  There is no approach outside of chemically interrupting his neurological patterns with pharmaceuticals  //

This is the answer.  Anesthesia and controlled poison injected into his legs.  Over and over again.  With no long-term benefit.  And without all of this he won’t walk. 

Talk about immediate guilt and shame when we don’t sign the dotted line with eagerness. 

Talk about feeling trapped.

Talk about an emotional roller coaster month in and month out as we wait for the toxin to bring comfort and mobility but dread the week it goes away.  And the pain and confusion for a little boy’s heart as he can’t understand why he can walk sometimes and other times cannot.  And despite short seasons of progress he really isn’t getting any better. 

And the more we ask questions and delay committing to this treatment plan the higher the tension gets between them and us. 

I think being Levi’s advocate took some getting used to.  I’m a people pleaser you see, and being an advocate means to plead on someone else’s behalf.  And sometimes that ruffles feathers.  Or it takes the damn feathers off completely!  And that is okay, that is what I’m called to, and I trust in a God who will give me wisdom to know His plan for Levi and who has wired me with instincts that I need to trust. 

So as my sweet boy’s advocate I call a time-out.  We are heavily pursuing the serial casting approach as an alternative treatment plan and God has opened a potential door.  We will know more soon and will keep you posted.  We covet your prayers, this road is hard and confusing at times.  Thank you to all who read. 

Mike and Kelli