a Rearranged Life

“Everything is better now, right?”    The poor girl had the misfortune of being the 20th person that night to ask for an update on my son.  At that point my husband had nothing left.

Blank stare.

He literally just had nothing left and didn’t want to be rude and say the obvious truth, the truth that she seemed so exuberantly oblivious to.

Don’t get me wrong, we are incredibly grateful.  It is NO SMALL THING that our son got through 3 surgeries in 2 weeks time with no complication…and deep brain stimulation, no less.

But yes, my son is still in a wheelchair with his body strapped down in more ways than I care to count.  We still assist with every element of his needs, as much or actually more than any 4 month old child would need. He’s a smart cookie, so in addition to the physical needs we have to have a lot of supports in place to help him express and interact with his world.  But never enough.  We rarely know his feelings and thoughts, which is no small thing on a parents heart, especially when your child is undoubtedly going through pain and odd sensations of all kinds.

As for the DBS, this is a long game.  We knew that the hard part would be the additional strains and needs post-surgery, but now we are IN it.  And knowing a thing and being immersed in it are 2 very different realities.

DBS programming is a long and tedious process, especially for Blue’s diagnosis and inability to communicate.  Every week we spend 3 hours at the hospital messing with the voltage in his brain and guessing and praying that it will help.  It’s all guess w0rk.

I try with everything in me to understand what hurts and what helps.

And it saps me.  I skip social events just to sleep.  My neck spasms more.  Homework keeps coming.  We still are interviewing and searching for nurses and helpers.  We currently have 4 of our 60 allotted hours filled.  Other doctors appointments.  In several sectors of life we are fighting to get what our boy needs.

I’m also in a position with pic-K.org where I am seeing what is sometimes a daily influx of new cases of horribly mismanaged newborn jaundice…other babies forever altered by something so preventable…something labeled as “extremely rare” happening way too often.

We actually did a conference here on October 1st and I got to share a room with 20 amazing families.  We shared tears and smiles as we both mourned what happened to our kids and celebrated their indomitable spirits.  That is a chapter in and of itself…and I have no idea how myself and 2 friends pulled that miracle together in 1 month of planning and post-surgical living…but by God’s grace it did come together and I pray it blesses and encourages each of these families in their journeys.

So as an update, no it’s not all better.   It’s harder in many ways, and I can’t say that it will all be okay (we’ve had a recent setback that has gut-punched us and I’m still processing that one). I might not be able to offer you any comfort that can leave you able to walk away with a smile and a nod…although I mostly really wish I could.

But even on the hard days like today where I spent too much time battling on the phone and in offices and sleeping and dealing with my own pain in PT – I know that hope never dies.  It is rearranged and reconfigured, but it never dies.

The expectation of wellness, of happiness of function may be forever altered, but hope and joy are not dependent upon circumstances. It’s not all better now, and it doesn’t have to be.

One breath.  One step.  One Prayer at a time.