There's No Way Out But Through: When you're longing for the end to be in sight...

One year ago today…

It was a Saturday. A stalwart of the faith was in his final days; we went to visit and pray with him.  We left the kids with some good friends, knowing young ones couldn’t go in the hospital with us.  That day was the first day something unusual happened with Addison.  We didn’t know it at the time and wouldn’t come to find out until four months later after several more episodes, each one increasingly frightening and more intense than the one before, that our youngest, sweetest, and only daughter was having seizures.

One week ago today…

It was last Monday; January 30, 2017.  Another MRI.  This one is the one, they say, to quantify and clarify and to help rule-out. 

4am rising.  Getting ready for the day we’ve waited seven long months to see.  6am arriving. 

“See the moon?”  I say as she points to the sky above…

At the children’s wing we carry her sleepy, tiny body to the Pediatric ICU.  We are taken to a room and greeted by a number of staff.  My heart pounding so loudly I think others can audibly hear it.  I know that’s not true, but each thump seems so deafening.  They prep Addison.  I pray. 

“It’s not more peace I need…its more faith.  Faith to walk in the peace You have provided,”  I pray.

We have a pre-procedure tea party.  My husband, an all-country guy, doing his best British accent, proclaims to Addison, “when in doubt, pinkies out!” 

We meet the anesthesiologist, his nurse, and crew of other folks in scrubs.  They do more prepping.  I do more praying.

“My peace I leave with you, My peace I give to you,” I whisper under my breath.

They have me hold her while they start the IV line.  She wails.  Pulls away.  And screams.  They start the medicine, she screams once more.  “It’s thick and it hurts going in,” the doctor says.  Seconds later, she slumps forward.  She’s not fully out, but the medicine is already working.  I slide out from under her.  The doctor, pushing buttons on the machine turns back towards her.  “Her blood pressure is dropping” he tells the nurse loudly.  He re-positions her chin as the nurse returns with supplies.  Another machine starts dinging.  The doctor, now attending only to Addison, monitors her breathing in and out, holding her chin upwards.

“Peace…not as the world gives, do I give to you.  Do not let your heart be troubled, nor let it be fearful” my heart recites again.

Stabilized, now, they whisk her and the whole ICU room with her out the door, down the elevator, around several corners, and down the long wide hall.  We follow close behind. 

They slow down and leave us at a small, empty lobby.  Etching on the glass says MRI Waiting Lobby.  We go inside and they continue on, down the hallway. 

We wait.  I watch for them.  I pray.

   

It’s about this time that Adam starts to settle in.  Resting his head on the back of his seat, he closes his eyes.  Still, though, I’m fully alert, watching and waiting.  The employee in that office is addressing individuals who come and go.  After finishing up with a man, she asks if we’re there for Gleaton.  I respond and she tells us they called from the MRI room to tell us she is doing good.

 

Relieved, I turn back, facing forward and start watching for them once more.  Sometime later and several other patients having come and gone, I see them wheel Addison’s bed up by the lobby door.  I jump up and we fall back in line behind them.  Dr. Todd tells us she did great.  He tells us her blood pressure dipped again, but came back up quickly.  We make our way back down the long wide hall, navigating the several corners, and back up the elevator we go.  They tell us the medicine is fast acting but is also quick for her to come back from.  She is still asleep when they wheel her back in the room.  Dr. Todd stays with her…with us, until she starts to stir.  He sneaks away to his desk while the nurse stops the IV and removes it before she fully wakes.  He peeks back in.  Still not awake enough, he lingers.  Her eyes pop open and she looks our way.  A faint smile and the dimple impression on her cheek, she starts to really stir.  He sees her sit up and he comes back, shakes our hands and gives us aftercare instructions.  He offers his number and the nurse provides it to us on a piece of paper. 

This was different anesthesia than has ever been used on her before…she rubs her eyes and takes her oxygen out.  She looks at us again, and instead of the standard moaning and crying as she comes out of anesthesia, she squints and gives a hearty “helloooooo!”  The next 30 minutes continue in this same medication-induced stupor.  She eventually gets mad that we’re laughing and tells us to “hushhh!” 

Silently, deep on the inside, my heart is still.  The audible, rhythmic beating before is now distant and quiet.  In my soul.  On my knees.  Thankful.

The next day as I’m getting ready to go pick Sawyer up from my parents, my phone rings.  I answer and it’s our neurosurgeon’s administrative person. We speak and she explains they need to cancel her follow-up with Dr. Belirgen (the neurosurgeon).  We discuss why and then she tells me to expect a call from either him or the nurse to go over the results.

 

There’s a heaviness to the conversation. I hang up and start my two hour drive to get our son.  Of course!  We want what’s best for our daughter.  Wouldn’t you?  Of course, we have an outcome in mind … one that would be great for her and her prognosis.  And then I’m reminded…a dear sweet friend of mine last year, in giving bits of her testimony to a group of ladies, shares what the Lord has taught her over and over and over again: To hold it (whatever it  is in our lives), loosely.  As I travel, her voice reverberates in my mind.  To hold it all in an open hand…

We were told by surgeons and neurologists and nurses that any change in the MRI would be a bad change.  They were looking closely for cancer markers, hardening of the lesions, new ones, or blood displacement…pressure on the brain or growth of the existing abnormalities.

But if I’m to really believe what the Bible says…if I’m to really put legs and feet to this faith that I claim, I must continually look to the cross as the objective evidence that God is for us and not against us.  That He sacrificed His own son to purchase us.  This is the faith walk.  God is able and He will, but even if He doesn’t, He is still good.

See, disappointment is always rooted in hope.  If we read the Bible honestly, we shouldn’t be surprised in the day of trouble.  Why?  Because over and over we see that God can but His plans rarely work themselves out according to how we think they should.  In the walk of the redeemed, we know He will accomplish all He is going to do.  And holding it all in an open hand – holding it loosely…that’s where we see Him redeem disappointment. 

We had all but just walked back in the door and my phone rang out again.  The neurosurgeon’s number.  I scramble to hush Sawyer who has been telling me for a solid two hours all about the snow at Granny’s house.  I swipe to answer the call.  It’s the neurosurgeon and his nurse.  They ask if now’s an ok time.  Trying my best to not sound too eager I let them finish the sentence before blurting out the urgent yes. 

The nurse proceeds to tell me there is no change in the MRI.  Nothing new of concern, no new lesions, no blood displacement.  Everything looks exactly the same as last time and that’s what we want.  Relieved, I close my eyes and exhale.  I think this is it!  This is great!

And then the conversation continues. 

I hear the words but it’s like they don’t sink in…like they’re just floating above the surface.  I listen as they explain that there’s just too many coincidences … the doctor isn’t satisfied to just leave it here.  He thinks we need to be seen by yet another specialist.  A geneticist.  They tell me why.  Quickly I race through all the doctors she has seen since June – pediatric neuro-ophthalmologists, ENTs, neurologists, specialists, regular run-of-the-mill pediatricians, and neurosurgeons.  Do we really need to add another? Is this medically necessary?  

They continue, talking more about a specific condition they’ve been trying to rule-out since the beginning; they talk about tumors and organs and skin.   Simply, yes, it is necessary.  I hear them explain they think there’s something more going on with her but they can’t pinpoint what.  I hear them say that a geneticist will give them a more comprehensive medical picture.  They talk molecules and DNA but my soul hears the Psalmist’s words… that He created her.  He knows her.  He knows every molecule in her body because it’s Him who put it there.  He knows what so many can’t seem to figure out.  He is infinite in His knowledge and wisdom.  In comparison, we are limited, finite.  Even what some of the most specialized, experienced, and educated minds haven’t been able to put together, our God already knows.  He already sees.  He’s continued to care.

There’s no way out but through. Obedience is always asked of us, regardless of the circumstance. When we’re unyielding in what is important – when we’re unyielding in the obedience - the ending yield isn’t what’s most important.  We’re responsible for our obedience and He’s responsible for the rest.  That doesn’t mean that if we’re wholly obedient that everything goes our way.  It means that God can and will but even if He doesn’t, He is still good.  Still holy.  Still mighty.

We are grateful for amazing MRI results.  We are thankful for an outwardly healthy, spunky, energetic, and otherwise feisty little girl.  There’s so much to be grateful for…even for the unanswered questions, because it’s in those vague places that God shows up in great and mighty ways. 

So, there’s no doubt who gets the credit here because it’s Him; it’s always been Him. 

From the Fullness of His Grace,

Lacey

As always, thank you for your continued prayers for our sweet little one.  We should be hearing from the geneticist this week. We follow-up next week with her neurologist and besides the geneticist, the next big hurdle is to try and isolate her seizures from her brain abnormalities.  If they can do that, it’s a start to being able to rule-out more complex diseases.  Again, we can’t thank you enough for your prayers!