And two steps...

Despite what the Demie Diva's former neurologist condescendingly told me, she does, quite clearly grow at a steady rate.  This is NOT good on many levels.

First - CHA-CHING.  Sometimes, you just don't get ahead of the girl's growth.  The closet is currently FULL to bursting - because I know that the next nth of growth will take us out of about two-thirds of the clothes she owns.  I have to buy up because...well, 1/2" every couple months...

Second - do you have any idea how difficult it is to be 5'1.5" and parent a 4' seven year old?!  Sheer force of nature my friends, is all that keeps me as the "big" person.

Worst of all.  Epilepsy sucks.

You see, until we get the blood work scheduled to determine her baseline levels of meds, we're still re-acting to her symptomatically.  And, after this weekend, I think we can safely say it's time to up those bad boys.

One of the joys of my life is teaching at a boarding school.  I get to invite students into my home for shared interests - like, oh...Doctor Who.  In the middle of this weekend's episode, the Demie Diva had an absence seizure.  She just was gone.  Once she was back, and I'd: repeated what I'd asked her when she was "gone"; confirmed that as far as she was concerned I'd only asked it once; sent the 7 year old off for jammies, and informed the slightly freaked out teenagers that "this week's episode of epilepsy sucks has been brought to you by the Demie Diva's mom", I exited stage right to get the girl ready for bed.

As I did so, one of my students informed me that I was amazing.  "I've been watching this, taking it in, seeing what you did there...you're my hero."

Oh, sweet teenager....I'm not a hero.  I'm the mom of a hero.

Epilepsy sucks.

Invisible Disabilities

Before I go any farther into the musings...I am NOT in any way diminishing the wonderful autism advocacies, mental health advocacies, or any other therapeutic-intervention-necessary invisible disability group you choose to name.

I have incredible respect for all of these groups, and all parents who battle  advocate daily for their children whatever the diagnosis.  It sucks.  It's hard.  It's totally worth it.

It's also isolating as hell.

THERE.  I said it.

The thing is, with some special needs, you have incredible lobbies.  You have the "sexiness" of breast cancer - no, it's not ...not at all...but y'all, half the population thinks that ta-tas exist for their sexual gratification!  Autism, because of Autism Speaks, and the controversy involving the flawed vac. study, gets press.  Epilepsy's just not sexy.  The kids who benefit from medical marijuana aren't sexy, they're so sick they're pitiable.

Great.  What the world knows about epilepsy is either the kids with profound seizure disorders in their mother's arms, or my hero, Jerry Kill, seizing on the sidelines while coaching the Golden Gophers.

It ain't like that for everyone.

I have been hesitant about writing this post since we went to Mayo this summer.  And yet, as I talk to people, and I gear up for another school year, I realize that I have a duty to write this post that goes beyond me, and it certainly goes beyond the Demie Diva.  It goes to every child who struggles with an invisible disability, and every parent who advocates tirelessly, making it seem "manageable" to those who need to deal with the crap secondary issues which arise.

The Demie Diva is, neurologically, an interesting patient.  She's gone from above the curve cognitive development (mommy blogging has record-keeping uses) to psycho-social swiss cheese.  When tired, her normal brain waves are those of a five year old.  Even on some pretty heavy darn duty drugs, her brain is pretty busy every four of five minutes.  And then you figure she has to shake off the cognitive impact of the electrical buzz. ...before it starts all freakin' over again.

She has lots and lots of unusual triggers, many of which fall under assorted epilepsy syndromes, but none of which is linked to the decisive factor that would allow us to designate her as "X syndrome"...
But, on the plus side, all of the strange triggers I was observing when she was first diagnosed  - overheating, hunger...yeah, they are triggers for epilepsy.  Best of all, the doctor at Mayo is a woman about my age, raising kids who are 8 and 5.  Consequently, we connect as women and as mothers.  She looked at me and said "We need to determine how and why she's gone from above the curve to ... well...not."

The angels sang.

For the first time in four years, I had someone willing to hear me.  To validate what I was documenting, and most important, perhaps, to teach me about my child's really sucky disease.  Of course, this is not without financial cost.  We have to do a ton of fluid analysis - mostly the two easy kind to get.  But, if we crap out - and let's face it, we likely will - we're looking at a spinal tap.  So many moments of I want to vomit are warring with my need to "fix"...

The need to fix is winning.  I have spoken to several folks at work in the last few days about what this means for the Demie Diva.  To those who've asked "why didn't this get done four years ago", I simply shrug.  I state, matter-of-factly, and without an edge of hysteria, that it means she has to be sound asleep by 8:30 because now I KNOW what I always intuited: sleep deprivation is lethal to neurological function for this child.  It means I don't do stuff at night that requires my presence outside of the home - except when I have to.  It means I decline any and every invitation (not that they come a lot - people get tired of being turned down for the kid who just seems a little different) unless I have a sitter who can firmly and without being played get her to sleep.

I was sharing this with a friend from work tonight, as I headed off campus.  She looked at me and said "I don't know how you manage".  Ironically, the same sentiment was echoed by one of the teachers at the Demie Diva's school when I sent the "accommodations and what to watch for" email.

You make it seem so manageable....

She has the right to be just like any other kid except when the invisible disability becomes visible.

What choice do I have?

Did I mention the dogs?

Somewhere along the way, in the midst of occupational therapy, vision therapy, and a little bit of psychological therapy, I found myself increasingly drawn to a schnauzer rescue organization here in the Heart of Dixie....

I can't afford two dogs.  I can't afford to throw money at the rescue.  So, what's a girl to do?

Simple.  Become a foster home.

Shut up you...you know who you are...

Now, I had ulterior motives.

• I teach children who are, for the most part, privileged.  My house is part of my employment package.  Yet, I give very little back to the wider community.  The Demie Diva's needs are such that, quite frankly, I can't always commit to a Saturday at X o'clock activity of service to others.  However, I could, here, show her how to give back with something that she loves.
• I have a child who is pathologically afraid of letting go of me.  She has abandonment issues BIGTIME.  Look...here are doggies who are often abandoned, yet people care about them enough to love them and help them find forever families.  You too, little daughter, can give back and discover that it's possible to love something or someone that isn't "yours"...and perhaps you'll learn to trust someone besides your mother.
• I have a child whose greatest gift is in earning the trust of animals.  For all the ADHD behaviors, she's a very gentle and empathic little creature.  This is something at which she can excel.  And, to be honest, God knows she needs that.

So...we now have three fosters successfully placed with their forever families.  I have made new friends who have a passion for the breed I love.  And, as I type, we've got two in the pipeline.

One, Blair, will be a quick stop at our house.  She was a stray, and just needs cleaning up and loving.

The other, Tripp, will come to our house soon-ish.  He is what my truly Southern friends call a "hot mess".  Little Tripp has had a hella trip.  He's about 3.  He has a significant heart worm infection.  He has scabies.  And somewhere along the way of his horrible wanderings, some asshat shot him in the leg, shattered it and he has managed on three legs.  The rescue will pay for his vet costs - the dips for the scabies;  the meds for the heart worm; and the amputation of the leg.

Today, they announced that we would be his foster family.  I have been called everything today from an angel to a saint.  The folks who actually DO this, know that what I am is nuckin' futs.  He's going to take a lot of work.  A. Lot.  

Somehow, I think that little Tripp will be very good for the Demie Diva.  

A lot of work, with great reward, all originating in love.  

Maybe that's the real reason I do this.

Heigh Ho, it's off to Mayo we go!

There are times when I am profoundly, and profanely, grateful that I was raised as the child of a physician and nurse.  It makes me a medically pragmatic parent.  Given the hand the Demie Diva's been dealt, that may not be such a bad thing.

That's what we call understatement in the world of my day job...

So, when we went to the Fabulous Pediatrician for the DD's 7 year check up and the FP looked at me with all the pragmatism of a gazillion years of practice and life as an epilepsy parent, and said "Why do you need a neurologist?" I was floored.  What the heck did she mean why did I need a neurologist?!  My kid freakin' has epilepsy and it's scary stuff, FP.  What?!?!

Then she showed me the clinic notes she got from the person who allegedly had my child's best interest at heart.  One page of social history which focused mainly on my ability to understand and speak English.  One page of drugs on which my child's chemistry was fortunate to depend.  One page of diagnosis codes - including the chronic ear infections from which she hasn't suffered since she was 2-ish, and a diagnosis of "Abnormal EEG" instead of "Generalized Epilepsy".  AND...another page of drugs.  The same drugs.

Nothing about the inpatient video EEG (hereafter V-EEG) that my kid had in February.  Nothing about the neuropsych eval.  Nothing about my request for records to take to Mayo, because I was already sure after the scary drug response from the extant neuro we needed a second opinion.

She had a point.

So, instead of a second opinion, I was hoping that the peds neuro folks at "The Mayo" would agree to continue to care for the Demie Diva.

See...now this is where we go back to the medical pragmatism.  I have no delusions about my child EVER performing at the academic level at which I did.  She doesn't learn that way, and it's not her passion.  But, she was ahead of benchmarks before epilepsy, so something has to be causing this...and it, plus all the other neurological funkiness with which she contends has to be connected.  Only place I know of that thinks holistically is "The Mayo" - and yes, I know the biases of my native state are showing, but you know...sometimes, spending a month at the Diva Grandparents' has its advantages.

In the process of getting ready for the trip up, I was trying to get more than the discharge notes for the V-EEG from February.  (Bear in mind, it's June as I'm getting ready)  And, I NEEDED that film/tape, because my insurance company wasn't going to pay for two of those suckers within a calendar year - and really, who could blame them, what with their executives needing those six figure bonuses and all - and I sure as heck couldn't afford that kind of inpatient monitoring.  I called.  I left messages.  I even used the magic phrase "patient relations"...NOTHIN.  Until, finally, five months to the day after the Demie Diva had been discharged, three days before our consult, I got hold of a human being who told me it hadn't been read.

Pragmatic, yet profane from time to time...

I managed not to go ape.  Barely.  You see, the DD's neuro had been out of town when we were inpatient, and his colleague covered.  BUT, the neuro we usually see was supposed to read her film.  It never happened.  NEVER.  I was somewhat rational when I explained to the person on the other end that Dr. P wasn't our doc, Dr. M. was...and um...this would be negligent at best...I got the CD of the abnormal incidents overnighted - at their expense, and hand carried it to the consult.

Day one was simply a one hour EEG.  Day two was a 90 minute full neuro workup with history.  Where have these people been for the three plus years of neuro hell we've been in?  I learned more in those two days than I have in the years of being treated where we are.  I learned that the Demie Diva's brain is busy; she has abnormal brain waves every three to five minutes - and that these DO affect her cognitively.  I learned that when tired, the DD's brain functions at the speed of a five year old's.  Can we say "blonde" days?

More important, I learned that everything I wondered about as a trigger - overheating, hunger, stress...ALL are triggers.

She is neurologically funky.  Each trigger is tied to a syndrome that she doesn't fully exhibit symptoms of, but that we have to test for causes of.  So...I came home with a list of pages and pages of blood, urine, and spinal fluid tests that need to be run.  They'll go to the pediatrician, she'll order them, and we'll see what turns up.

I came home finally feeling heard.  I am not wrong.  She should be able to do better, but something, chemically, is getting in her way.  No one has ever wanted to know the etiology of the Demie Diva's epilepsy before.  Ever.  The FABULOUS doc at Mayo does.

At last.  At last someone is asking the right questions, and ordering the tests that might give us the right answers instead of throwing drugs at her.

Where the heck have I been???

It's a valid question dear reader - assuming, of course, that you're even out there.

I have been in what can only be called "exceptional child hell".

All of us know our children are exceptional...but when you have a child whose exceptionalities impact their otherwise exceptional self, you know what stress really is.  I'm not going to whine, and I'm going to stay as objective as I can....but here's what we've been up to:

OT for the Demie diva...after testing two years behind, she busted through in half the time, and met all the goals that weren't affected by her visual issue.

A neuropsych eval that measured her WISC score at 69.  If you've met my kid...yeah, no.  BUT, with a neuropsych who wanted her to get more ADHD meds, when the vision issue she has creates behaviors that are ADHD-like...and who discounts the visual issue.

And the visual issue - Vision Therapy required for something called Convergence Insufficiency.  Short version?  The Demie Diva's eyes didn't work binocularly.  So, everything within 10" of her little face was blurry.  Which, of course, explains why she couldn't copy the shapes on the WISC...
So that was another 12 sessions.  She should have been in longer - but the kid again did it - and got herself discharged in the minimum number of sessions of therapy required.

Of course, I noticed that in the middle of the VT as she was rewiring her brain, she was seizing.  And as she learned to read (HURRAH) she was seizing.  So we did an inpatient Video EEG.  (And five months later, we're still waiting on the report)  Now, of course, her neurologist is treating symptoms.  My pediatrican and I are wondering why no one is looking at the whole.  The meds crash from her stimulant exacerates the epilepsy cahs she has to hold on to control harder.  Enter non-stimulant.  Neuro wants to put her on an old-school evil drug rather than go back to conjoint therapy...

I am tired.

That's where I've been!

Wedding obsessed child...

Do we have an intervention for this????

Personally, I blame Disney.  She was "you be the prince" before she was a flower girl.  NOW, however, it's exponentially worse.

That, you see, is the Demie Diva's favorite play.  She gives me marrying necklaces.  OR she's the mommy and I'm the sweetie...and she tells me I get to watch her wedding (projection, much) and she is going to marry Grandpa.  That's right, folks.

Mind you, the Diva Grandparents have been married for 46 years, and are sappy as all get out (I am so lucky!)...so when I asked the Demie Diva what her grandma was going to do while she was marrying her grandpa, she told me..."She will sit with you and watch."

You see, love takes many forms.  Love for us this summer also included the Diva Grandma coming down in time for the sixth (?!) birthday, then driving for THREE DAYS to the land of my birth, and making us welcome for a whole month.  It was glorious.   I'm sure there's a blog post there, but it's my selfish pleasure to cherish those memories close and not share them with the world - sorry, friends, but some things are just best left there.

And so, over the course of the month, the Demie Diva got to see the grandparents in action.  They are a unit.  They worked together - Diva Grandpa is a doctor, and Diva Grandma a nurse who worked with him when they met and fell in love...and again for many years prior to her retirement.  They finish each other's sentences.  It's actually adorable.  Seriously adorable.

BUT...I digress.

So the wedding obsessed child, of course, is going to marry the male role model who figures most in her world.  As do all little girls.  It got to a point while we were up North, however, where she was calling her grandpa "Daddy".  Sigh.

And the individual who should have that title?  She's royally pissed at him tonight.  He was on campus today - for 2 plus hours.  She saw his penismobile car.  She knew it.  And...he wasn't ever calling our house, or knocking on our door.  Asshat.  So, when I texted him to say "she wants to see you", and he was on his way to the fields...well, all six year old hell broke loose.

She pouted.  She used her sad voice.  She cried and sat in the car.  EVENTUALLY, the XH called...and the Demie Diva, in response to the ringing phone, announced "I'm not talking to him," and proceeded to state - so she could be heard - "I miss him.  I want him to come see me.  But.  I do NOT want to talk to him."

Somehow, he managed to find the time to come over and the Demie Diva told me I had to go to work so she and "my Dad" can play all alone.  I did.  They did.  And, the black mood was gone.

I couldn't make him understand the emotional depths of our birthdate when I was married to him.  All I can do now is keep telling the Demie Diva that she didn't do anything wrong.  She isn't naughty.  Her dad made a choice to do X instead of coming over.  She can't make his choices for him...only he can choose to do what he wants.

Usually, one kisses a frog and he turns into a prince.  My poor girl is discovering that it doesn't work that way in the real world.

What a lesson for a six year old.

Love...

I've been thinking about this a very great deal lately...

The Demie Diva was the greatest flower girl ever.  She "forgotted" to "sprinkle" the petals.  She kissed a wedding guest, aged nine, twice, and decreed that she would marry him.

Mostly, though, she showed everyone how much she loves her Rica and the new spouse.

Me, I was exhausted.  The venue got cleaned and decorated.  The bride got made up and hair done.  And zipped into her dress...and caterers got finessed, and photographers got clued in to really funky family dynamics.

And on the day, the beautiful bride deliberately faked a throw of her bouquet, spotted me in the mix - she insisted I get in the group - and threw that bouquet at me.

Love...those things are all love.  Love is doing for someone, without strings, and regardless of the cost to yourself because you can make something special even more so.  Love is hugging a beautiful young woman, who is the child I would have had if I'd started at 22, and crying at the beauty of her smile on her wedding day.  Love is looking at that child, when she keeps thanking you, and saying "pay it forward".

You see, my beautiful big girl is entering a two year commitment with Teach For America.  Her wonderful spouse is deferring his law school plans so that she can honor it.  Some day, she will be the one adult a child trusts.  She will watch that beautiful awkward adolescent become a confident adult who has learned that they are deserving of love.

If she is very lucky, she will sit on the lawn at an Ivy League school, and watch that child graduate cum laude, after putting him/herself through school.  And...she will know that in some tiny way, she helped them get to that point.

At the rehearsal dinner, the bride's father commented on the strange relationship of the faculty and students at "the Creek", and how wonderful, yet bittersweet such events must be for us. He isn't usually that insightful...  And he was right.  That's the beautiful thing about teaching...it does, really, become an act of love.

You see, the week I got back from the Ivy League school graduation, (yes, I'm braggin..) I went across the street from the school where I live and work...I went with two of my colleagues...and I sat with five of my former students and their parents at the funeral of an amazing mother.  And when it was time for the committal, I sat with a 21 year old and held her hand until she was ready to leave her mother.

Love takes many forms.  I'm always stunned and surprised when there are strings attached by others.  You see, for me, love is the one thing I give, knowing that I'm enriched more through giving than through receiving.