Wednesday, January 22, 2014

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.

Wednesday, January 15, 2014

"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?


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