Clear Tunnel

Life has truly felt like a tunnel the last few days.  I take that back - it feels like that tube at Chuck-E-Cheese - the one you go into when it's your birthday. You walk in and the door is closed and the wind is turned on.  It's a clear tunnel so everyone around you can see you looking crazy, wild and silly - your friends AND strangers! Your hair goes everywhere. They make you wear these goggles which make it hard to see.  You don't know where to look.  You are supposed to be grabbing that "money", but it's all swirling around you so fast that it's hard to even focus.  Yep, that's EXACTLY how it's been . . . 


We've been trying to settle back into routine, and the boys really seem to be thriving off of it.  Heck, I AM thriving off it!  I love having routine and meal times together, and we've been able to do that since we've been home from the hospital.  I have to say - we've been eating amazingly well because of the graciousness of precious friends!  All three of my boys will be spoiled rotten once we get through that last frozen meal that was lovingly prepared for us (I'm afraid I let them down in the cooking department).  

Lu Lu enjoyed a shopping with Mommy and Nunnie on Thursday!

Cheering Henry on at the Assembly 

Henry had one night this week that was really hard we finally attributed it to a loose tooth (what is it with Henry and all of his tooth issues/pain?!).  Thankfully, I pulled that tooth on out and he was acting and feeling better.  He is excelling in school, you guys!  He's even reading A.R. books now and received an award at school on Friday!  

Henry's Assembly 

Oh, Friday!  Lucy looked like she was sleeping during the entire assembly, which seemed odd to me, seeing how loud it was.  After checking, it was clear that she was in seizure - the new type of seizure she's been having where she looks like she is sleeping with some slight twitches in her hands and feet.  I rushed her back to the school office where they quickly got us into an office for privacy (the school handled it so well).  Both Grandmothers were there, so they calmly followed my instructions.  We called 911 and had Lucy taken to OU.  She was out the entire ambulance ride.  

Still "out" during the EEG

Always a Daddy's Girl

They of course took us straight to a room, and it turned out that our favorite neurologist (Lucy and Henry's current neurologist) just "happened" to be in the ER room next to us.  This never happens, ya'll - it was absolutely from the Lord.  The doctor immediately came in and was able to evaluate Lucy and order tests right then and there.  It was comforting to have our OWN neurologist laying eyes on Lu Lu as she was in this unresponsive episode.  


They did bloodwork, an EEG and a CT scan.  All that can be explained is that NKH is an ugly disorder that affects your brain, and how it misfires today may not be how it misfires tomorrow.  These episodes are absolutely neurologic and could be NKH progressing in Lucy's body.  This all could be happening too because she is still healing from ecoli that was in her port and her blood stream.  Mike and I really feel that it is a combination of both things.  


Unfortunately, with seizures and genetic disorders and things that can progress, there's just not a whole lot you can do.  Your choices are limited.  But, we are doing the best thing for Lucy right now, which is having her seen again this week by a few doctors and by increasing some of her anti-seizure medications.  


Conner played a fantastic soccer game on this fall Saturday, and Lucy laughed and giggled throughout the day, which was a real treat.  Henry had a good day too, but he seems to be manic again tonight for some reason and we are praying that he will somehow fall asleep (and SOON!).  


Back to that tube/tunnel . . . 

I know that, in our case, the tunnel is clear because we invite others in to share our journey.  We want to be open and honest, REAL about the ups and the downs that come with losing a child and with raising a child(ren) with special-needs.  We share freely and openly because the Lord has called us to, although I assure you, there are many things we keep to ourselves and to our family as well.  

Living in a clear tunnel isn't for everyone, and I completely get that.  I also know that it may sound silly when I complain about it when I'm blogging here for all to see!  Thank you for your grace as I find the balance of sharing my heart in journal form, passing on our story so that others know they aren't alone, and somehow meeting my deep desire to see the Lord glorified in our roller-coaster journey.  

Scripture, along with encouragement from others, has really helped me over these tough weeks. I will leave you with a verse that a Dear Friend recently reminded me of, and I think it's the perfect verse if you are like me and feel like you are in that tube/tunnel:

Isaiah 46:4

"I am He who will strengthen you; I will sustain you and I will rescue you".