Joy into my darkness - Headed Home Part 2 August 30 2014, 2 Comments

I apologize ahead of time for the errors, the going back and forth between tenses and all that stuff. It is what it is I looked back on the happenings 1 year ago today. August 30, 2013

August 30, 2013 - We had just got home at 10:30pm the night before from a 10 day picu/neuro admission.  I was bone aching tired, but we were home under one roof.  All a mama wants.  Remy went to play with her friend, Christine.  I decided to take Sander on a little date to Target, then a hair cut and Five Guys for lunch, his favorite.  It had been a few days since I spent proper time with him. I was missing him and he was missing his mama.  Oh, the joy that boy brings!  Bryer really hadn't slept much the night before, but seemed content to nap on the ottoman for a bit.  We had a new seizure med, Sabril, we were trying out.  Also new to his already lengthy routine was twice daily Lovenox injections for a blood clot in his leg - a result of the misplacement of a central line into his artery and not into his vein.  Needless to say, little man kept us busy, but it was so good to be home.  Did I say that already?!?


Mom came over that evening to help as it was always chaotic, but especially soon after a discharge as we fumbled to settle back into routine.  She loved giving Bryer baths in the hospital and at home.  It was their special time together.  She is a RN by trade and has been for 30 + years.  She knows what she's doing and is good at it.  Not to mention, she loved and still loves Bryer deeply and I know he felt it...most especially during those hair washes. I didn't worry when I left him in her care.  So, as she gave him his last bath in our sink, I took the kids out to play. It was a beautiful evening. 


Really, you took Sander on a date all day and then took them out to play that night?  That seems weird when you have such a sick and fragile baby that just came home from the hospital.  But the reality is, yes.  The pendulum swing between the world of Bryer and the world of Remy/Sander often blew my mind, but even more so as I look back on it. Like being home with R & S and mc'ing a full-on stuffed animal fashion show with run way, spectators, music and twirls... as Justin sat with B on a ventilator.  Then me with Bryer during a significant brain MRI also while on a ventilator, all the while getting video from Justin of Remy riding her bike without training wheels for the first time. Me leaving B at the hospital to get Remy so we can go pick out her first pair of soccer cleats. She beamed.  I sent Justin the picture.  Me sitting in a darkened picu room eating a bag of peanut m&m's actually feeling sick-for-home, so I FaceTime the kids to say goodnight…they are full of smiles, I love yous, freshly bathed and all PJ'ed up ready for bed.  I say goodbye and look at my just-in-a-diaper, all tubed up, unbathed, deteriorating baby boy.   Not sure if I am painting the picture accurately, but swinging back and forth between the two worlds was somewhat surreal.  I digress..




Back to August 30.  We had all settled in for the night.  Bryer had fallen asleep on his blanket upon the ottoman and Mom said she would sleep on the couch next to him.  He slept from 8pm-12am.  Upon waking, he began seizing every 4-5 seconds. Nothing was helping or calming him.  I came down and together we sat for 3 hours.  We thought it was the clusters he had experienced before.  But no, it was different.  There was no letting up. We tried it all. Holding him didn't help…almost made it worse.  He was sweating.  Our body heat made him hotter. We decided to give him another dose of Sabril. Justin came down around 4am.  We called the on-call neuro dr.  He gave us a script for distat which Justin left immediately to get.  He returned an hour later and Mom gave it to B as a suppository.  We waited.  

Those dark hours from 12am-6:30am... passing him back and forth between Mom and I. Rocking, patting, singing, praying, laying on ottoman, trying left side, then his right side. More patting, rubbing, stroking his hair, praying, singing….SEIZING without cease.  He screams, whimpers and moans inbetween.  The beads of sweat upon his brow. Eyes WIDE like he's frightened. Sweat soaked onesie after sweat soaked onsie. We were doing anything we could think of to help.  But nothing did. Huddled around the ottoman, these were some of the worst moments of my life.  

The other two kids slept peacefully upstairs as we waged hell-like war downstairs.  I am not exaggerating.  If I were to imagine what hell is like, it would consist of watching your child struggling and suffering and being completely helpless to do anything at all. Counting on the extra dose of sabril.  Nothing.  Counting on administering distat….still nothing. Soon, I hear little feet on the stairs.  I look up and see Remy peering through the banister rails.  My tender-hearted girl.  Before I could order her back to bed, she scurries down and glues herself to my side.  Sander soon follows with Tiger, his go to blanket, in tow.  It is about 5:30am.  Sigh.  I remember so clearly the feeling of despair, and I could see it on the faces surrounding Bryer as he lay seizing on the ottoman.  My mom was taking a turn at trying to console and comfort, hunched over his little body, singing in his ear.  

"Ok, this disat isn't working," I say. I stand up.

It came decision time, something we had wearily encountered many times before with Bryer.  We HATED making the decision to go.  To go and to admit.  My heart completely deflated…a familiar heaviness sat upon my chest.  Anxiety churned through my veins.  I felt desperate, stomped on, so utterly grieved.  My eyes were dry and burning.  And although we had just brought him home 36 hrs earlier, we knew we had to go back.  

"Is there anyway we can bypass the ER?? There's got to be a better way,"  I plead.  

So, we call the neurologist and he arranges for a direct admit to the 10th floor - neuro. That makes me feel a little better.  

"I've got to get these kids back in bed.  Justin, I can't go.  I just can't watch anymore tonight. I will get in bed with these two and come relieve you later today.  I just… can't, " I say through tears.  

Justin, with quiet resolve, rises to the occasion.  I get the carseat and gather his belongings.  I make sure we are up to speed on meds and his feeds are on track etc.  I get Cow and some paci's.  You know when you are packing up your baby for the sitter? Kind of like that, but way different.  And with that, I send Bryer and Justin to Children's for what would be his last admission.  Mom follows behind and heads home for some well earned rest. 

The door closes.  The pendulum swings. 

I turn around and look at my 4 and 2 year old sitting on the couch.  Dawn is just peeking through the windows.  It is quiet.  I go to them, picking up Sander and taking Remy's hand, we walk upstairs and into my room.  I lay in-between to prevent a squabble and one nuzzles in deep on each side of me.  I feel overwhelming peace, love and joy as I lay there looking up at the ceiling.  Praise you, Lord. He has a way of piercing through the darkness when I need it the most.  This was one of those moments. It's true that mother's have limitless capacity for love, for I poured as much love out on them in that cuddly early morning snuggle as I had all night to Bryer.  I love my kids intensely.  All three of them. But, I will be brutally honest, I was relieved to be settled between them rather than physically and mentally suiting up to forge into the hell of suffering with Bryer.  If I could just escape for a couple of hours...I was so completely exhausted. I think I only got an "Oh Lord, help…" before I fell asleep.  

I think back on that moment with mixed emotions of guilt and second-guessing of my choice not to go that morning.  But, I am reminded of the scripture Matthew 11:28 "Come to me all who are weary and heavy-laden.  I will give you rest" and also Ephesians 3:20 "Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us.."

It was obvious I was weary and needed rest.  But, beyond rest, He even managed to deliver a shot of pure joy into my darkness.  Maybe it's just me since I'm the one who experienced it, but the fact that I can even write of the joy, peace and love I received on a night like that, is pretty darn amazing.  It is a testament to God's goodness and continued presence on our journey with Bryer. He was with me.

After a few hours of rest, I woke up and made arrangements for the kids.  Then I headed down to relieve Justin.  What I walked into, well, that's perhaps another blog post.