Thursday, February 19, 2015

Caging the Monster

We’re more than an hour late to our appointment and the traffic is bad in the tunnel. Our taxi driver’s minivan has plastic seat covers and a “Disney on Ice” performance at "The Garden" is causing gridlock near the hospital. Didn’t see that one coming. Oliver starts to have a cluster of seizures, broken up by fitful brief periods of dozing. I look over at Andrew, with Oliver draped over him. I say, “I don’t know if we’ll ever stop the seizures.”

So much snow...

The best metaphor I’ve come up with is one of a cage. With each drug, each surgery, and each diet, we try to put the seizure monster in his cage. With each new cage we get anywhere from 1-6 months of containment, but the monster figures out how to take over again. He rips the cage apart and begins to destroy once more.

We’ve fully maximized our current caging options. Since 2010 we’ve been through at least 90% of the treatment options for epilepsy. We can count on our hands what is left to try. In the whole world. It appears there is no “hail mary”.  

When we get into the exam room at the hospital we show our doctor two videos of the most recent cluster seizures. We explain how the rescue medication, Diastat, is no longer working, and the sense of terror we feel knowing one of our kid’s life-lines no longer seems to work.

She spins in her chair to her computer and pulls up Oliver’s latest MRI. She looks at it. Looks at me. Looks at it and then stares at me for 30 seconds. I don’t say anything and she doesn’t either. I know the wheels are turning in her brain. The video we showed sparked a connection for her.

She is thinking that a calcified tuber in Oliver’s left frontal lobe may be a hotspot for many of his seizures (especially the kind in the video).

She says that another brain surgery could possibly be an option. We are not upset to hear her say this; we are relieved that there are still things to try. I tell her that I’ve almost lost hope four and a half years into fighting the monster. How we’ve put so much hope in each cage we build. Each one does not hold the seizures. If I’m really honest, sometimes I feel like the seizures rule our entire life. That they have made me much more of a caregiver than a mother...that breaks my heart.

Oliver has his own kind of Ash Wednesday cross

I know that we can’t kill the seizure monster. If I could I would strangle him with my bare hands and rip out his heart. I would be barbaric in my dealing with this awful diagnosis. I would have no mercy. But all this anger is so misplaced; it is a disease and there is no way to kill it.

So here we are. Unexpectedly spending the night in Boston, Oliver’s head covered in electrodes. Thankful for a private room, pizza delivery and an incredible care team. Andrew has already drank 7 cans of the tiny ginger ales. He likes hospital snacks.

We don’t know if another surgery will be the cage we’ve been looking for. We don’t want to see the inside of another operating room full of barbaric tools for opening skulls. We are not anxious to go through the waiver forms again and be told how badly brain surgery can go wrong. Once is enough for any caregiver, too much for any mother and father.

The thing about being the parent of a medically fragile child is that your choices are never simple. How do you choose to make the least worst choice among many bad ones? There are no benign choices, because every one you make comes with a waterfall of side effects, interactions, and consequences.

It weighs heavy on us. Being the protector and decision maker for someone who is helpless to speak for himself.

I want to one day live in a place where no cages are needed.

It takes a team to hold Oliver down for the electrode application

Today is Ash Wednesday. The hospital is filled with people with crosses on their foreheads, including all of our nurses. Looking at them I am reminded of our frailty.

I am reminded of how little is within our control. I am reminded that there are seasons of mourning and contemplation, and seasons of celebration and joy.

I didn’t get to attend the service at my church. Tonight no one will dip their thumb into a bowl of ashes and put it on my forehead. But, tonight I don’t need an outward sign, for the inside of me has been burnt and scorched. My faith has been tested in a real and raging fire.

Tonight sitting in the dim light of this hospital room, my comfort is that He will make

messes into miracles

ashes into beauty

and one day there will be no more cages 
and no more monsters

instead there will be true freedom, 
redeemed bodies and 
a wedding feast that has been planned since the dawn of time


Go To Girl said...

I don't know if this is your goal, but your posts consistently teach me so much about grace, perseverance, marriage, and faith. I am in awe of the poise you exhibit, and the incredible love the three of you have for one another. I pray for Oliver to have relief from this monster, and for God to reveal his bigger plan to you. All my respect, Courtney

cathy said...

SIster...that is the Good news....we pray so often for all of you....your words contain so, so much truth.

MAR said...

I love reading your blog. You have beautiful writing and you hit home on a lot of feelings I go through with my medically fragile child. It is so true that you have to choose the least worst choice for your child who cannot speak for themselves. And the guilt and worry I feel with every decision, takes over some days. I love the last part of hope - something we all need to hear. "Messes into miracles, ashes into beauty".

I hope you find the answers you are looking for Oliver and continue feeling the comfort from God.

Mrs. M said...

Oh Stephanie, my heart goes out to you.
Your comment about being more than a caregiver than a mother resonated with me. I've never thought of it that way before. Our Mother Roles are not typical at all. All I can think is how blessed Oliver is to have you though. To have a mom who fights for him and is willing to try anything and not give up....although I'm sure you've felt like it from time to time. Exhaustion.
May this EEG or MRI give you the team the answers they are searching for.