Reconsidering Jerks

(This was written and shared in November of 2012 after Julia was  first diagnosed with a new type of seizure. One year, three months and two drugs later we are headed back in to  the hospital to see how things are looking...Very rarely do we get to see with absolute clarity how what we considered to be a burden is actually a blessing. This was one of those rare moments and I think it is important to remember...)

 
November 30, 2012:
I’m aware I have been a facebook posting maniac this week with Julia in the hospital. The casual FB observer may be thinking to themselves “enough already lady, get a life!” To which I would respond “I agree.” But I feel compelled, mostly out of gratitude, to summarize what I think happened this week. 


For over a year Julia has been having these sharp jerks which we thought were seizures – we would increase her medicine, they would stop, they would return, up medicine, jerks stop,jerks return, etc… They would not leave us alone! We decided it was time to take a look at these jerks on an EEG before adding our next medication, so an inpatient EEG was scheduled and we started praying the jerks would show during the EEG for Julia’s doctor to analyze. 
EEG’s are hard for all kiddos – and for a child like Julia who doesn’t understand what is happening and has major sensory issues, an EEG is torture. So for this visit Julia had to be sedated first, then hooked up, then kept from ripping out the cords for the duration of the visit – not an easy procedure for her, thus making us even more anxiously hopeful that going through this would be meaningful and we wouldn’t be putting her through such a stressful ordeal for nothing.
Once she was hooked up and recovered from the anesthesia we were just praying for the jerks to start…but nothing. When the doctor came to see us in the morning after her first night we were so bummed, “no jerks yet…” we said, but she surprised us by telling us they had discovered something else overnight that had not been on any of Julia’s prior EEG’s, a new type of seizure, basically an all night seizure in her sleep (called ESES). This is a non convulsive seizure so we would have NEVER known she was having them. She looks like she is peacefully sleeping but really her brain goes into an electrical firestorm keeping her from getting any good sleep 95% of the time. 

This could have been happening for over a year, maybe 2 given how long it had been since her last EEG, our poor girl. And we never would have known had we not come in to look at those jerks…

Those jerks. 

The jerks I have cursed for the past year, prayed would stop, pleaded with God to take them away from her. Those jerks that would not leave us alone, that relentlessly returned time after time. Those blasted jerks were now our heroes… 

And I am left with the thought, how much of my life am I cursing, thinking is an affliction when instead it could be my life preserver? I don’t mean to preach, but for me this has been such a spiritually humbling week of going from "why God why?" To "thank you, thank you, thank you." 

We rarely get these ah-ha moments when what has been so painful to us reveals itself as a blessing – but when we do I think we should take a moment to think about them. Because more often what is painful continues to be painful, what is confusing stays confusing. No “ah-ha”, no “oh now I get it” – more often than not we must endure and try to have faith – and this is why faith is hard, and this why faith is greatly rewarded. Our human reaction says “this is wrong and should not be happening,” but our Father who loves us and wants good for us says “Trust me.” For me this week I was just reminded that this is the type of faith I need to have and want to have in all things – whether what is happening makes sense in my limited perspective or not.


So, the doctor was able to start treatment right away on these new seizures for Julia and she had a remarkable response the first night to her new medication. We have so much hope that good sleep will be life changing for our little lady – and as for those jerks? Well they showed up right before the EEG tech came to take the leads off of Julia – and ya know what, they aren’t seizures. I don’t know what they are. A movement disorder, a twitch, the result of sleep deprivation… I don’t know what they are, but I know now they were not the curse I considered them to be, they were a blessing and they are causing me to reconsider some of the other “jerks” in my life that might possibly be misunderstood blessings as well.

"No Restorative Potential" An open letter to Kaiser Permanente

Dear Kaiser Permanente,

This afternoon we received  your letter informing us of your decision to deny our six year old daughter occupational therapy because she demonstrated, in your words, "no restorative potential."

This was quite a blow. Not the part about denying OT (at this point denials from you are a dime a dozen, no offense). If our plan doesn't cover OT we accept that and will figure something else out. But that's not what your letter said. You said the reason she has been denied OT is because she demonstrated no restorative potential...huh, that's different.

That's subjective. That's a decision someone (unknown to us), makes based on some matrix (unknown to us), using selective data about our daughter (unknown to us), to decide whether or not she has restorative potential (which honestly what that even means is pretty much unknown to us).

And you decided she does not.

So this isn't actually about the coverage we should get through the plan we pay for. This is about you trying to play God by making judgments on the value of our daughter's life.

While you clearly deem yourselves knowledgeable enough about our daughter to determine she has no restorative potential- you also clearly don't know our daughter.

You don't know the girl who is a survivor and fought twice to stay in my womb before she even reached her 20 week ultrasound.  You don't know the girl who couldn't suck when she was born but kept trying to choke down milk so she could live and grow.  You don't know the girl who started having hundreds of seizures a day when she was only six months old, whose brain was so overwhelmed with seizures she shouldn't have been able to do anything but be a zombie and yet would still smile for her daddy. You don't know the girl who went through medication after medication after medication to reduce her seizures enough for her brain to finally at 18 months old get a break and begin to recover. Who miraculously started using her vision after a year of being blind, who learned to sit up on her own at age 2, who started to reach for toys, to hold her own bottle and put her own pacifier in her mouth at age 3. All of this to the amazement and wonder of those of us watching her closely.

You don't know the girl who continues to meet developmental milestones even after her seizures returned, this time in the rare form of a static seizure during sleep. You are a medical expert so I'm sure you know all about ESES and I don't have to explain this to you, but just in case, this means she gets NO GOOD SLEEP.  Imagine how you feel after one night of bad sleep. This girl has been without restful sleep for 3 years. She closes her eyes to sleep and her brain goes into a constant seizure AND YET even in spite of this she continues to develop.  You try that.  You go without sleep for even three days and see how well you are functioning, let alone three years. Without sleep she has started standing up and taking steps. She has learned to do somersaults and boy, they are the most amazing somersaults you've ever seen. She signs yes and no, she looks at books, she points to her eyes when she wants her glasses and she points to pictures of toys she would like to play with.

This girl who according to you has NO RESTORATIVE POTENTIAL, who is currently on three very strong anti seizure meds and still has seizures in her sleep does more every day to demonstrate potential than any other human being I know.

But you don't need to know any of that. I'm sure the information you based your decision on (what was that information by the way, I don't remember being asked?) was enough to determine her lack of restorative potential and justify your decision to cut her off from therapeutic services. Therapeutic services which I believe are meant to help people overcome their challenges right? But just not our daughter because her challenges are too many - so therapy wouldn't apply to her. I guess the people your therapeutic services are for have a lot less problems and need a lot less help and therefore qualify for more help- is that how it works? That makes sense.

You don't know my daughter Kaiser Permanente so maybe you don't care at all about this label you've slapped on her. But I know some of you have daughters or sons and if you would put yourselves in our shoes for just a moment and imagine what it would be like get a letter labeling your child as having NO RESTORATIVE POTENTIAL your stomach would turn too and you would think, wow, that is no way to talk about my child or any human being really, and you would be upset and you would be outraged and you would want that language and that mindset about human value changed.

Ultimately this is not about me proving to you my daughter has potential, she does, I know it, anyone who spends 5 seconds with her knows it - this is about me asking you to reconsider the way you talk about a human life: to eliminate the option of ever answering no to the question of potential for any human being. You have potential, who are you to say someone else does not?

Yours,

Laurie Arnold
A blessed mother to Julia Anne, age 6, bursting with potential!

I wanna see you be BRAVE!

I'm not a fan of the current Microsoft ad campaign for their new tablet:  Play games, touch the screen, surf the web, blah, blah, blah and then they end their commercial with these song lyrics:

"Honestly, I wanna see you be BRAVE."

What the heck does being brave have to do with buying a tablet?

Do they mean you have to be BRAVE to buy their products - if so, that's a really odd marketing strategy.
Do they mean you are BRAVE when you use technology to play video games and peruse social media? God help us if that's the new standard.

I can not come up with a justifiable reason to use this word BRAVE in conjunction with any use of technology. It's such a meaningful word to be used for such a puny act. And today I have no patience for it.

Today my friends from our support group are taking their precious daughter home from the hospital, and not because she is better. They are leaving the hospital so that their sweet June Bug can spend her last moments here on earth surrounded by the people who love her in the comfort of her home.

So yeah, that might be a better use for the word BRAVE.

Choosing to unhook. Choosing to let her rest. Choosing to stop the fight because you are placing her needs are above the selfish part of the soul desperate to keep her physically here at any cost...

That's BRAVE.

Facing death, facing the end of this part of the journey. Facing the rest of your days without a part of your heart...

That's BRAVE.

Continuing to live and continuing to love after your greatest fear has been realized...

That's BRAVE.

In the last six years my life has collided with BRAVE.

Yes of course in the kids. The precious kids. The inspiring kids facing huge obstacles while still smiling - not even knowing the fight they are in.

But more so in the parents. The precious parents who DO know the fight they are in. Who DO know the stakes. And they don't run. They face the fight head on without holding anything back. Offering everything they have up to God or the universe just for their kid to have a chance. These parents who learn to give shots, and suction throats, and feed through tubes, and place catheters. Who hold through seizures, restrain for IV's, challenge the medical field for non-approved treatments, advocate for therapy, demand acknowledgement and refuse second best. These parents who love, hold, hope, cry, fight, fight, fight, and accept when the fight is over.

That's BRAVE.

I don't know what Microsoft was aiming for, but honestly, if they really wanna see BRAVE I have some names for them.

I AM *bleeping* Hanging In There!

If you would like to see me punch you with my eyes, tell me to hang in there.

Of all the button pushing phrases I can think of (and there are many), this one for me is the worst.
I have an actual physical reaction to this phrase. My body recoils like I've just been shoved, hard.

Maybe my reaction is a little much? A little sensitive are we?
I mean what's wrong with this little phrase? It's always said with good intention right?
Yeah, I know. But I still hate it.

I've spent some time examining my extreme hatred of this phrase and here's what I've come up with:
Maybe it is because I am immature.
Maybe it is because I am insecure.
Maybe it is because I am an oldest child and I don't like to be told what to do.
(I have problems, pray for me!)

But probably I hate this phrase most of all because... I AM *bleeping* HANGING IN THERE!!!!!!

What else am I possibly doing other than hanging in there?
I haven't offed myself.
I haven't abandoned my family and hopped a plane to Fiji.
I am right here, very much hanging in there.
In fact, I am as 100% hanging in there as humanly possible.

What have I done or said to indicate I may no longer continue to hang in there? Why the need for this type of feedback? The implication of "hang in there" is that I am considering possibly no longer hanging in there - and that is insulting.

I think it comes down to this:
Sometimes life feels hard. And I know in general we prefer to hear just the good stuff from each other. We prefer an optimistic, sunny response when we ask each other "how are you?"
Make it easy on me and say you are fine.
But sometimes life is legitimately hard and sometimes it goes on for a while, and IF an honest answer to this question of "how are you?" is given, or IF an attempt to be vulnerable by sharing the hard stuff is made, please do not do the verbal equivalent of palm to the face by telling that person to "hang in there." It instantly shuts the conversation down.

Instead:

If don't want to hear anything difficult, then just don't ask.

OR

If you really do want to know the truth but find yourself not sure how to respond when you hear about hard things, just say that: "My friend, wow, I don't even know what to say."
Or say, "Thank you for sharing the hard stuff."
Or say, "That sounds really hard."
Or say, "I'm really sorry, that sounds hard."
Or say,  "Please say more, I want to know more about what this is like for you."

These are the responses that encourage, these are the responses that form bonds, these are the responses that keep the conversation going, these are the responses that sustain us.

Life is really hard sometimes, way to hang in there!!!

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.

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.

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.