Thursday, November 21, 2013

I'm a Special Needs Parent and I have CTSD

My mom kept Julia last night so Wes and I could have a mid-week break.

Over dinner we talked about how we both feel like crazy people lately and I shared with him my theory that all special needs parents have my newly created diagnosis: CTSD (continued traumatic stress disorder).

How else do we make sense of this extremely volatile reaction we are both having to Julia starting a new medication. We've been complete basket cases this past month prepping for and starting these steroids.

Because we are traumatized.

Because this past month isn't just about one new med, it's the culmination of seven years of unresolved trauma. Seven years of stuffing grief and swallowing fear in order to keep functioning one day at a time for the girl we love.

No resolution - just the next thing.  If the next thing is bad, the trauma piles on. If the next thing is good, the trauma goes unexplored because who goes and pokes at trauma when you finally get a breather? You don't, you leave it alone. Let sleeping dogs lie - or something like that.

This one new medication is the next step in a journey of eleven different medications we've tried so far since receiving a diagnosis of epilepsy for Julia. Eleven roller coaster rides of watching her seize, being given our options, weighing the pros and cons of our options, deciding to go for one of these options, fearing the worst reaction, hoping for the best, anxiously watching her, meticulously reporting every little change to doctors, in some cases celebrating victories, but ultimately in every case being defeated by the return of a seizure. And starting again.

How can we not be traumatized?

When the present becomes hard I've noticed I start having flashbacks to the the early days.  In the last week I've been maybe 50% present because my brain is obsessed right now with going back to the beginning to relive those first traumatic moments.

The phone call from the doctor 1 hour after the 20 week ultrasound.

While we were calling friends and family to say "It's a girl!" our doctor was calling us to say "It's her brain."

The floor disappeared under my feet and the room started to spin. I couldn't catch my breath.

Not the brain, not the brain, not the brain.

You can fix a heart right, or lungs - you can fix lungs? Let it be lungs or heart or arms or legs.  Not the brain. How do you fix the brain?

The call back to my mom: "something is wrong with her brain."

And the helpless, what the hell is happening, clinging to each other for dear life embrace with Wes in our tiny living room which continued to spin out of control around us while we held each other and knew that the entire story we had made up for our lives was swirling and lifting up into the sky, never to be seen again.

How can we not be traumatized?

This diagnosis I've given to Wes and me and the entire special needs parent population may not mean much in terms of day to day life - we still keep the motions going. But for me it helps. It helps to pause for a moment and remember why the ache and the frenzy exist. Why the walls are up and fists are drawn.

It is not unreasonable. It does make sense. Yes, we are a little crazy but there is a reason. A really good reason - our love for Julia.

Swallow. Deep breath. Shoulders back. Now keep going.

Tuesday, November 12, 2013

The Legend of Bun Bun

This morning my husband sent me a throwback picture of Jules and her favorite stuffed animal and it brought back memories of one our favorite family stories: The Legend of Bun Bun.

When we brought Julia home from the hospital our then two year old bull mastiff Lua went into a depression.  Her feelings were hurt, she felt replaced (which she kind of was), so she hid in the back room and wouldn't speak to us. We thought she was just pouting, little did we know she was scheming...

I was worried about Lua, but given that I was experiencing all the craziness of being a first time mom, I didn't have a ton of energy to put towards our brooding beast. I assured myself that this is common. It is common right?  I've read that the arrival of the second born is the most traumatic event in the life of a first born - or in our case first purchased. So we re-assured ourselves by saying things like "she'll grow out of it" and "this will pass."  But apparently time was not enough for Lua - in order to heal, she would need revenge.

She achieved her revenge one day on Julia's favorite stuffed animal Bun Bun (it's impossible to describe how soft and luscious this little stuffed bunny was, but seriously, we are talking about the world's most perfect stuffed animal). And she did it in a way we would never forget.

Julia and I left the house for a short while that fateful day, probably to attend a doctor's appointment. Bun Bun was positioned in his usual spot in Julia's boppy on the couch. When we returned home, I opened the front door to our tiny house and right there in front of me, perfectly positioned so there was no way to miss him, was Bun Bun, buried under an enormous pile of steaming mastiff poop.

The precision of the poop was both impressive (she's a large dog) and effective (RIP Bun Bun)!

We had been warned.

Message received Lua, message received.

Monday, November 11, 2013

Going Off Grid

Julia starts steroid treatment on Sunday for her uncontrolled sleep seizures.

The steroids lower her immune system, thus we will be going "off grid."  Not that our grid was that big to begin with, we don't do a ton, but still - what we do do (other than posting things online) is being put on pause. This realization hit me last night during my second bowl of "I"m feeling depressed so I can justify this" ice cream (delicious!).

We did this 5 years ago when we used steroids (ACTH) for the seizures Jules was having back then (Infantile Spasms) - we quarantined ourselves for two weeks. It was cozy, we had a thanksgiving dinner with just our tiny family of three, we kept her safe, the steroids worked, she got better.

This time it is for six months.

Six months of no Sunday school, no music class, no therapy, no outings, no visiting friends. Six months of semi-quarantine in the hopes that this time a different steroid (Predinsolone)will work for a different kind of seizure (ESES) and our girl will get better.

In the course of six months a lot will happen.  Holiday visitors will come and go, babies will be born, shows will be starred in, vacations taken...

And we will be here, in as safe and cozy of a bubble as we can possibly create, praying that 93% drops to 90%, then 85%, down to 80%, maybe even 70%, do we dare hope for 65%?  Yes, we do dare hope, we always hope.

Friday, November 1, 2013

Since I HAVE to be aware...

November is Epilepsy Awareness Month.  We've been acutely aware of epilepsy for almost six years now since our daughter was diagnosed with Infantile Spasms at 7 months old.

In all honesty I would give nearly anything to NOT be aware of epilepsy.

To not be aware of epilepsy would mean that I never have to give Julia another dose of meds, and I could stop carrying emergency rectal valium for unending seizures everywhere we go. I would never again watch an EEG screen record spikes and events every ten seconds, and I would never, ever, ever again helplessly watch and plead to God while my daughter convulses on the floor for minutes that feel like years.

But since I HAVE to be aware of it, since there is a month devoted to awareness of my nemesis, I might as well write about it.

Epilepsy is a terrible, devastating and relentless condition. It robs children of their development, and adults of their freedom. Being blissfully ignorant of this monster sounds like a dream. 

But like so many things in life, out of the worst situation there can be inspiration.  I have to admit that as much as I hate epilepsy I've been incredible blessed by the people I've encountered as a result. Those living in an ongoing battle with epilepsy are the inspiration.

They are amazing. They are brave. They are heroic. If we have to be aware, let's be aware of them.

Day after day these warriors overcome enormous challenges and find ways to learn and grow and develop and connect with the world even as Epilepsy is doing it's best to own their brain. They smile and laugh and take risks never knowing when the next seizure will temporarily claim their body. They are phenomenal and watching their fight is humbling to say the least.

I hate epilepsy. I want it gone. I want my sweet daughter, her precious little friends, and every person in this battle to be victorious for good. But because it is here for now, I will do my best to spread awareness of the brave warriors heroically fighting a battle they don't deserve to be in.

Let our awareness be in their honor!