Dec 17, 2012

Badge of Courage


When Claire was first diagnosed, the one thing that was guaranteed to make me cry (in my secret moments of weakness) was the thought of having to shave her head for surgery.  Not that Claire has the most glorious locks known to womankind but -- it's my baby's hair and the thought of seeing her little bald head in the middle of winter was upsetting.

It was one of the first things we discussed when we talked about her diagnosis and what everything meant.  I figured the details of the brain surgery would be difficult for her to comprehend but losing her hair? This I knew would be something she'd understand.

To soften the blow, I told my little fashionista that we'd be buying lots of cool hats. "But school doesn't allow hats, Mama."

"Oh honey. They will make an exception for you," thinking they'd damn sure better or there'd be some Mama Bear hell to pay.

Claire's best friend Gianna's dad is Claire's hair stylist. He also is a wig designer.  He promised to make Claire a super fabulous pink and purple sparkly wig.

Ultimately, we found out just prior to surgery that Dr. Skarli didn't intend to shave her whole head, just part of it.  I was relieved.  When we told Claire, I expected her to be relieved as well. Instead she was... vaguely disappointed.

I couldn't figure it out. I became concerned she didn't understand. Since Claire's diagnosis, I'm overly concerned (completely without cause) about her cognitive abilities.  She still acts and thinks like the same old Claire -- which is to say occasionally flighty and often airheaded.  Instead of simply remembering she is, after all, my daughter, I become worried there's some underlying brain issue that is causing her brain fart.

It's not.

She was disappointed because she was really looking forward to that sparkly pink and purple wig.  She wanted those hats. This is a child who enjoys the idea of accessories.

~~~

When they brought us into recovery to see her, after she spoke and identified who we were, along with a few math facts and vocabulary translations just to assure us that her brain was functioning fine, I checked out her hair.  It... wasn't bad.  Half shaved on the one side.  A bit punk-rocker.  Claire could work with that look.

They saved her hair for us. More precious than her first haircut.

The day after surgery, Princess Pickle demanded a mirror.  She wanted to check things out.  She turned this way and that, examining all angles.  I watched closely, expecting some kind of pre-tween angst. Maybe some tears.

Nothing.

Instead she kind of smirked. Said, "Hunh." And that was that.

We talked about balancing it out and shaving the other side.  That met with a determined "No!"  Mr. Scott (still one of her most favorite people) suggested a look similar to the lead singer of the 80s band Bow Wow Wow. "Nope."  She wanted to leave well enough alone.

The day after we came home from the hospital, I took Claire on a mini-shopping excursion.  We'd been told that any wig was a bad idea for her (holds in heat, traps bacteria against her huge incision) but hats were okay.  So hat shopping we went.  We picked out $87 worth of hats -- something our bank account could ill-afford but, honestly? The child was home mere days after a six hour long brain surgery -- I'll buy her the $50 sparkly silver sequin bedazzled beret.

For Claire's first truly public excursion with her peers, I was nervous.  I got her all dressed up, fixed her hair (we still have to braid it away from her incision site) and put her matching new purple hat on her.  Off we went to the rehearsal for her school's Christmas program.

When her classmates realized she was there, there were quite a few exclamations of "Claire!" and a smattering of applause. I admit, I got a little choked up.  I looked down at Claire as her friends rushed to hug her.  She was grinning at everyone and promptly whipped off her hat.

I wanted to grab it and shove it back on her head. I expected gasps. I expected people to draw back. I expected Claire to get her feelings hurt. But I looked down and she was still grinning ear to ear.  No one gasped. No one drew back.  The boys all looked like they couldn't get close enough -- peering at her frankenscar with absolute fascination.

We've been out in public quite a few times now, including two community theater performances that Claire did without any head covering on, in front of full audiences.  She met with audience members before and after the shows.  But it didn't dawn on me until tonight when our landlord stopped over to fix our broken water heater, and we were discussing Claire's medical ordeal.  Claire had been in the living room, we were in the kitchen. All of a sudden she comes prancing -- literally prancing -- into the kitchen, strikes a pose, and shows off both incision and hairdo.  It did not dawn on me until that moment,

She's proud of this.  She's not embarrassed or ashamed or feeling the need to hide things under a fancy hat. She's comfortable enough in her own skin (and hair) to show it off to the world.

Here's my scar. I'm not embarrassed.  I'm a survivor.

Yes you are, baby. Yes you are.

Dec 12, 2012

Survivor Guilt


This post has been rolling around in my head for a few days.  Five days to be exact.  I've struggled with how to word it, how to phrase things.  And then I just decided to write it how I've written every other post -- just blurt it all out and let the chips fall where they may.

On Saturday, December 8th, exactly 24 hours after Claire was wheeled into recovery from a six-hour long brain surgery, she was taking a walk around the PICU.  Walking. Unassisted. Being told to slow down and not run.  She was wearing her stylish purple IV gown complete with sparkly cape, matching furry slippers, and ordering family friend Mr. Scott to come hold her hand (she's a bit of a flirt and he's one of her favorite people.)

video


Since the day we found out something was "abnormal" with Claire's MRI, I think I have run every worst-case scenario through my head. Her having a stroke and being left a vegetable.  Finding her unresponsive in her bed. Wheelchairs. Atrophied muscles. I've thought of them all.

And death. I've spent some time planning what I would do if Claire died.  I was scolded for this. Told I was tempting the fates.  But, I am a planner by nature -- it calms me -- knowing what to do.  And since so much of Claire's diagnosis and health crisis was out of my control, this was something I could DO.  Something I could figure out. 

Added to this was the thought of planning Claire's funeral.  This is where I fell apart.  Nine months ago, my friends Thomas and Erin lost their beloved son Willem due to complications from HLH.  His father, whom I did not actually meet in person until the day of Willem's funeral, chronicled Willem's pain and suffering in a blog.  I recommend every parent read it.  Because when your child is annoying the hell out of you and you are tired and weary and worried about things that only feel important -- you can take a moment and realize not one of those things matter. The only thing that matters is your family.  Spend some time thinking about what you would do if it all went away.

Erin was the epitome of grace and poise. She was, quite frankly, amazing.  I still, to this day, feel like an absolute moron for what I said to her when I went to her to hug her. "How you doing?"  It wasn't the words so much as the inflection.  It didn't come out like the concerned inquiry I meant it to be. It came out a bit like Joey Tribiani on Friends... "How YOU doin'?"  I could have bit my tongue off.  And Erin... Erin smiled at me.  A grin almost.  And said, "I'm shitty.  People keep asking me that and I keep telling them, I'm shitty."  And we laughed and I sobbed and said, "Of course you are. You are shitty. Because this fucking sucks."  And she hugged me and I felt better. And then I felt awful because here we stood at her first-born child's funeral and she was making ME feel better.  

Thomas spoke at Willem's funeral.  He spoke with passion. He spoke with grace.  He spoke with love and meaning words I would not be able to get out of my throat if put in his circumstances.  It was gut wrenching and heartbreaking and absolutely the worst fucking thing I've ever witnessed.  And yet, it was also a beautiful and amazing tribute to a beautiful and amazing boy.  I felt then, and feel now, that my life is less for not having met this child.

I remember being in awe of Thomas as he spoke.  Knowing deep down in my soul there was no way on earth I would EVER be able to do what he did. And arrogantly believing I would never have to.

So, as I lay awake in bed counting down the days until a surgeon would go into Claire's brain in an attempt to fix it, I would think about a funeral that I could not do.  I had been shown by an amazing family the right way to bury your child -- who the fuck wants to be shown that?? -- and I knew, unquestionably, that I lacked the strength, the courage, to do the same for my child.  I would fail her.  She deserves so much better than what I am capable of doing.

As we walked around the PICU, I looked into some of the rooms. Most of them were occupied by tiny little babies full of tiny little wires plugged into tiny little machines. What seemed like hundreds of them.

I've spent a lot of time in an intensive care unit.  First when Quinn was a baby, then when my mother was dying.  You get to know the routine, the feel of the ward.  The vibe.  And as we walked past a room three doors down from Claire's, I looked in and I knew.  I could tell by the way the occupants were standing around the bed.  I could tell by the looks on the nurses' faces.  I could tell... these people were saying goodbye to the tiny little bump under the green blanket in the crib.

My heart ached. I felt a sob well up.  And I felt... guilty.  Terribly, horribly, inexplicably guilty.

Why?  Why does that family have to say goodbye and I am watching my daughter practically skip down the ward?

Why do I get to keep my daughter, while Willem's parents struggle to find purpose and meaning and carry on after losing him?

I've pretty much never done a thing right in my entire life. I have a complete lack of faith. I have anger management issues.  I'm not a very nice person. 

So now I lay awake nights trying to figure out what this all means. What am I supposed to do now? Am I supposed to suddenly get my shit straight? Because, frankly, I don't even have a clue how to do that.

So I will do what I always do -- soldier on with brute force and ignorance and hope for the best.  But, at the same time, I will remember the grace and courage of a father saying goodbye to his son. I will remember the mother who hugged me and made me feel better in her worst moment.  I will remember the tiny little life fading in that room.  I will be grateful. And I will try -- try to do better.

Dec 7, 2012

Living in the Land of Missed Opportunities


It's 1:45 AM on surgery day. I'm wide awake, despite taking a triple dose of Klonopin. The anxiety meds are doing just enough to take the edge off... barely.

Claire is sleeping peacefully.  I am reminded of when Quinn was a baby, shortly after we found out about his heart defect. I would sneak into his room at night under the pretense that I heard him fussing (total lie - Quinn never fussed), just so I could pick him up, bring him back to bed, and snuggle him.  I wanted to feel him breathe, feel the warm satin of his skin, smell his baby smell.

My baby is in the queen bed next to me. She's buried under a mound of loveys that must be placed on her in a particular order: bunny first, then purple blankey, the zebra blankey, then piggie under her arm, with various other favorites sprinkled around.  She would not want me next to her, stroking her hair... and she's a huge bed hog anyway. But I want to. I want to hear her breathe, smell her sweet Claire smell, and wish this all away.

Sweet dreams, Princess Pickle
In less than nine hours, she's going to get half (or maybe all) of her head shaved.  A doctor is going to *very* carefully remove the one blood vessel that can save her life, cut open her skull, and bypass the dead spot in her brain. She has one chance. One. If the blood vessel is damaged in the extraction - game over.  If it doesn't attach, if it doesn't work, or if it's damaged in the placement - game over. My nine year old's life hangs on a frail piece of tissue smaller than a shoelace, and in the capable hands of her surgeon.

I can do nothing.  I am so very NOT good at doing nothing.

We have received *such* an out pouring of love, good thoughts, well wishes, and prayers.  It's astounding.  Overwhelming. Total strangers have reached out to us.  I am... I don't know what I am. Grateful? Humbled? Amazed? Embarrassed? It's a combo of all of those. 

Mostly I want to grab my child and run away... hover over her like some feral animal and bare me teeth in a snarl should anyone get near.  Primal, wounded animal... that's me.  I lack any and all of the grace with which some people handle these situations.  

And praying? My relationship with God is... complicated. I am jealous of those whose faith brings them comfort.  Envious that they have something to turn to to ease their struggle.  I have my conversations with God, in my own way.  But I don't ask from him.  It doesn't feel right for me.  It's like asking to borrow something from the friend you haven't been very nice to - you just don't do it.

And yet, while I don't want to ask, I do want to beg: Please. Please don't take my baby. Please don't leave her with a shell of a life either. Please. Let Claire be who she is, and who she was meant to be. Not less.  More.  She is everything that is good and right with the world - the kid who has a smile and a kind word for everyone. A hug.  Who forgives and forgets. Who loves, unconditionally. Who talks and chatters and squeals and giggles.  Who is happiest when she is doing for others. Thinking of others. 

I look at my beautiful, peacefully sleeping daughter and all I feel is fear and regret. Fear that in less than nine hours she will never be what she once was. Fear that she won't become all that she should be.  

And regret for all the times that I was hard on her, tough with her.  All the times that I said no.  All the times I have ignored, been too busy, or was uninterested in what I viewed as trivial.  

She is a fighter - the iron fist in the velvet glove.  She is going to do what she wants, but she's going to do it without hurting anyone's feelings if she can.  She is tough. She doesn't feel sick or act broken, and that's half the battle right there.  She wants to know how quickly she can go back to school; when she can play basketball again; if she can still have a pool party for her birthday. She is looking forward to her life going on... Only even better than before.

Meanwhile, I only look back. To the missed snuggles, the unnecessary no's.

Now she is nine, and comfortable in her bed alone, and all I want to do is sneak in and snuggle. Not to soothe her... to soothe myself.

Nov 13, 2012

Worst Case Scenario


A friend of mine recently wrote, "Sometimes I think that we should have a special warning system for bad news when it comes. A different ring tone, a blinking light - something that says take a breath before you pick up the phone. Sit down before you speak a hello."

She's right.

This past August, Claire suffered an excruciating headache on the way home from visiting her dad in Minnesota.  She was in terrible pain for over eight hours.  As Quinn and I both suffer from migraines (I started getting them at eight years old, as did Quinn.  Claire is currently nine), I assumed she was following the family path as well.  The only curious thing was that her "migraine" lasted so long and was very different from how mine, and her brother's, are -- but I discounted that with a simple, "every headache is different."

Two weeks later when Claire got another headache, I was a little more concerned.  I decided to start keeping a headache diary for her.  Two days after that, when she got another headache, I took her to the local ER.  The doctor noted that she had no sensitivity to light or sound, was showing no neurological distress, and had no fever and therefore sent us home.  Two days after that, the day before we had our follow-up appointment with the pediatrician, Claire suffered another headache.

When we met with the pediatrician, I explained how I suspected Claire may be getting migraines, but mentioned that her symptoms were completely unlike mine or Quinn's.  Fortunately (although I didn't know at the time how fortunately), my pediatrician recommended that Claire get an MRI done.

A week later we received a phone call to come into the office to discuss the results.  Me, being the worrier that I am, was immediately concerned.  If everything was okay, why wouldn't they just say so? So, obviously (to me) everything was NOT okay, and that's why there were calling me in.

The morning of Claire's appointment I received a phone call:  The doctor was sick and we needed to reschedule the appointment for later in the week.  Trying to keep the hysteria out of my voice I indicated that I did not want to wait more than one day to find out the results.  They kindly agreed to squeeze me in the next day.

Peter and I were sitting in the office, looking at this photograph of a group of what must be the ugliest babies I have ever seen.  I'm staring at these children and this horrible thought popped into my head. The kind of thought you wish you could unthink because it feels like you are tempting the fates to even think it...

"This is the moment before our whole lives change forever..."

Moments later, Claire's doctor walks in, sits down, and gives us the news: "Claire has lesions on her brain."

Lesions. On her brain.  This can't be good.

For the next few moments I could only hear a buzzing sound as blood whooshed through my ears.

Lesions. Leeeesions. LeEsiOns.

I heard the doctor say that it was probably nothing to worry about, but that she was referring us to DeVos Children's Hospital to "get things checked out."  I heard the words "demyelization" and "MS".  And lesions. On. Her. Brain.

We had to wait a month before we could get in to see the pediatric neurologist at Helen DeVos Children's Hospital (HDVCH).  It was a painfully long month, full of me attempting to act normal, but hearing the echo in my head near constantly...  Lesions. Lesions. Lesions.

Our appointment was scheduled for Monday, October 22nd.  We arrived at the neurology department bright and early -- only to be told that, due to a schedule snafu, they had canceled my appointment.

I cried.  For those who know me best, you know this phenomenon is one of the most frightening to witness. I. Don't. Cry.  I hate crying. Abhor it. Believe it is a sign of sissies and weakness.  I am intolerant, bigoted, prejudiced and hateful towards tears.  It is simply not done.

And I sat in the neurology scheduling office and cried for a half hour.  Peter was frantic. Claire was terrified.  Mama crying is a very bad thing.  The stress of a month's worth of hearing that echo in my head had gotten to me. I had tried being stoic.  I had tried being funny - going so far as to make comments that Claire would definitely survive a zombie apocalypse as zombies probably don't like the taste of lesion-y brains.  But I had passed the point of no return -- I was losing it. Lesions. On. Her. Brain.

Tonya, the Special Processing person, went above and beyond the call of duty by getting us overnight accommodations at Ronald McDonald house and worked her tail off to get us a 7:45 appointment the next day.

We met with the chief of pediatric neurology that day, Dr. Stephen DeRoos.  He was amazing with Claire.  He was kind, friendly, approachable, and thorough.  He ran Claire through a series of neurological tests... squeeze his hands, run through the halls, look at the light... those kinds of things.  He had me run through the series of events that led to us being there.  Then he got down to brass tacks - lesions.

He didn't think they were that big of a deal.  Apparently, it's somewhat common - these lesion-y things showing up on an MRI.  She was too young to have MS and she wasn't showing any symptoms of, well, anything.

Whew! Yay! Hurrah!  Everything is okay!!

Well... no.  Because the MRI uncovered that Claire had more blood vessels on one side of her brain vs. the other.  Okaaaaay... what does that mean?

The doctor didn't know without further testing.  It could be this, it could be that, "it could be something called Moyamoya disease but that's really rare and unlikely and we're getting ahead of ourselves..."

We left the hospital with a diagnosis of "intracranial vascular disease", an order for another MRI/MRA, and the word "Moyamoya" now echoing through my brain, replacing lesions.  I googled intracranial vascular disease before we left the hospital parking lot.  Okay... this isn't good.  But the prognosis is excellent and... okay. We'll be okay.  It's not great news but... Claire is going to be okay.

I then googled Moyamoya, looked over the information for about 30 seconds, then promptly shut the browser down so I didn't scare myself to death.  "That's worst case scenario - not gonna happen."

Claire went back to DeVos this past Sunday to get her MRI/MRA done.  She enjoys this particular hospital - they go above and beyond to make it kid friendly.  The gift shop is phenomenal, she adores the garden, and the staff is exemplary.  We are so very lucky to be so near this amazing medical facility.

The hospital really needs better pjs

After Claire's testing was complete, the tech told us to expect to hear from the doctor within three to five days.  I left feeling like if it were really bad news, they wouldn't be letting us go.  Good enough.

At 4:30 yesterday afternoon - the next day, I wish I would have had that warning bell, that blinking light, that... something... that would have told me to take a moment before I picked up the phone. Take a breath. Picture something happy.

Claire has Moyamoya disease.  Our lives did change forever in that moment.

One the rarest forms of occlusive cerebrovascular disorders encountered in neurosurgery is Moyamoya disease. Fragile blood vessels proliferate around a blocked artery in an attempt to bypass an occlusion and their appearance on a cerebral angiogram resembles a "puff of smoke" or "moyamoya," a term coined by a Japanese team who first described the disease. Symptoms are TIAs, strokes, headaches and seizures. There is currently no drug treatment that is effective for moyamoya disease and surgery is aimed at bypassing the blockage with another artery to restore normal blood flow.

Fuck.

My son was born with a ventricular septal defect, which was discovered at his 3 week check up.  He spent almost a week in the hospital at the age of four months, during which time I slept in the oxygen tented baby crib with him.  He's had more shots, and tests, and pokes, and prods, and surgeries, and stitches than your average twelve year old -- to the point that he used to give himself stress migraines just going to the pediatrician for check ups.

Claire was my "healthy" child.  Sure -- she has asthma -- but that's been controlled for over two years now.  She was the robust one, the picture of health.  Finding out I have one bad heart kid and one bad brain kid -- it's just too much. I'm on overload.

This... sucks.  And I'm not good at this.  I'm not patient or understanding or wait-and-see.  I'm manic and demanding and let's do something about this NOW.  But nothing good happens NOW in a health crisis.  Nothing.

I am so MAD. I am just... angry... and pissed... and terrified... and mad. I appreciate all the kind words, and thoughts, and prayers. But if God's plan is anything other than her growing up to have a fabulous life, a beautiful wedding to a wonderful man (or woman) who adores her, giving birth to perfect children (if she wants to), and being loved and adored and contented and happy 'til the ripe old age of 97... I don't want to hear about it. Fuck God's plan. She is my BABY and I don't want to plan whether or not I should bury her or cremate her or where we would spread her ashes and what to say at her funeral. No. Fuck No. She is my baby and she is going to have a LIFE. A fabulous wonderful perfect everything she ever wanted LIFE. God. Dammit.

She has a mother, and father, and brother, and grandfather, and almost stepfather, and aunts, and uncles, and cousins, and friends who LOVE her.  As my best friend said, "This is Claire.  CLAIRE.  The world needs that little nut."

So. Screw you, fates, and world, and Moyamoya.  We aren't going down without a fight.  We are strapping on a fabulous sparkly purple cape, gearing up, and heading in to battle.

Because when the zombies come, my little lesion-y brain kid is our ace in the hole.

Oct 2, 2012

Why Our Health Care System Sucks


Most of my blog posts are rants, but they're well thought out rants.  This one isn't.  So it's probably going to be full of typos, and spelling errors, and grammatical errors.  The spelling and grammar Nazi in me cringes at the mere thought, but I need to get this off my chest and I don't have time to edit properly so I wanted to put that caveat out there.  Errors:  If you find 'em -- just this once -- ignore 'em.

Second, there's a lot of different directions and a lot of information here.  Like I said, it's not the most well thought out rant I've ever had.  But, as this is my diary (of sorts) and since I find writing cathartic (sometimes) you're all just going to have to bear with me.

Here we go...

First -- I'm a welfare mom.  I'm just going to throw that right out there.  I am a recipient of Medicaid.  As both my children have chronic conditions (Quinn has a heart defect, Claire has asthma), I feel VERY fortunate that we qualify for such a program.  Claire's prescriptions would run me about $700/month and pediatric cardiologist appointments are quite pricey. 

Now, it's important to note -- I have a job.  In fact, I have several of them.  I've been a virtual assistant for nearly a dozen years, and I make a pretty decent wage doing it.  I used to make a better wage, but then my long-term client fired me.  However, I'm slowly starting to earn a decent wage again and I'm hopeful that, eventually, I won't be a welfare mom.  Right now though?  Things are tough.  Therefore...

I'm also a food stamp recipient.  Thank-freaking-God, otherwise I'm pretty sure we'd all be starving to death.  And, because I'm fortunate enough to qualify for this program, I'm able to get good, healthy, non-processed food for my kids and me.  Which helps keep them healthier than if I didn't qualify for food stamps.  Processed food is, sadly, cheaper than the good healthy stuff. 

Any person who ever bitches about how "easy" it is to get welfare hasn't ever applied for it.  I needed to provide NINETY pages of proofs and fill out a 10-page form (I think -- it all became a blur after about page 5).  Then I needed to have a telephone interview and provide more proof.  According to my caseworker, whom I absolutely adore, it's about an 80-20 split of people who get welfare who need it, vs. people who are cheating the system.  Granted, I wish that 20% figure didn't exist at all, but what system doesn't have its fair share of cheats?  I like to focus on the fact that 80% of the people are getting the help they need, and that they qualify for.

Another thing to note?  I have an iPhone.  I've seen this charming little meme out there about the girl with the iPhone paying for her groceries with food stamps.  It never ceases to piss me off.  Why do people judge what the people in front of them are buying at the grocery store, and how they're paying for it?  You don't know them. You don't know their story.  But let me tell you mine.

This asshat needs to mind her own business at the checkout

I have an iPhone, an iPad, an iTouch, a Mac computer, and a Kindle.  ALL of them were purchased for me by my ex-client.  ALL of them were gifts.  And I use ALL of them in my pursuit of new clients to generate more business.  I didn't buy any of them -- I couldn't afford to.  And I can't afford to sell any of them either -- they are worth more to me and my future business endeavors than I could ever get for them on eBay.

I also have a Coach purse (it's fake), a 4-carat diamond ring (it was my mother's), and two platinum rings (combat pay for 11 years of marriage and birthing two kids -- at least that's how I think of them).  If I get run over by a bus tomorrow, these are pretty much the only inheritance my kids will receive.

I'm also on track to make about $12,000 this year after expenses and that's if I'm lucky.  And THAT is why I qualify for welfare.  So -- go ahead and judge me in the check out line for having my iPhone in my fake Coach purse.  I'm pretty sure it's not enough incentive for you to want to trade places with me for my food stamps.

Anyway... I have Medicaid. And I'm damn lucky to have it.  Except - most providers don't want to take it so a lot of time I'm left struggling to find good medical care for my kids.

My primary caregiver is FANTASTIC -- we are so lucky to have her.  In fact, if anyone in the Mason County area is looking for a smart, responsive, proactive primary caregiver, message me and I will give you her name.  She's wonderful.

However, both of my kids have "issues" that require specialty care.  Quinn has the aforementioned heart defect and it's looking like we're going to have to start seeing an endocrinologist to deal with his growth issues too.  I'm pretty sure pediatric endocrinologist are about as pricey as pediatric cardiologists.

Claire has her aforementioned asthma condition and we've recently found out she needs to start seeing a pediatric neurologist.  She'd been having headaches -- bad ones -- and my pediatrician decided to do an MRI.  Her results were not so good -- she has lesions on her brain.  I don't know what that means, that's why we need to see a neurologist.  But lesions... on her BRAIN -- that's sounding not so bueno.  In fact, it's hard not to freak completely out when you hear the word "lesions" coupled with "brain".

We got the results of her MRI two weeks ago and have been waiting to hear from the neurologist.  And waiting. And waiting.  So -- finally -- I called the hospital today and found out that they could see Claire. In January. Over 3.5 months from now.

I don't know about you, but I can't wait for 3.5 months while the words "lesions" and "brain" swirl together nightmarishly in my head.  I want to see someone NOW.

So -- I get on the phone and start calling.  University of Michigan.  Detroit Children's Hospital.  The Cleveland Clinic.  Mayo.  I explained to each of them that my nine-year-old daughter recently had an MRI where it was discovered she had lesions on the brain and my doctor was recommending a consult with a pediatric neurologist.  Each hospital asked me what insurance I had.  When I told them it was Medicaid, they couldn't rush me off the phone fast enough.  "We don't accept that insurance plan."

Click.

Wait... I have a nine year old. With brain lesions.  Aren't you supposed to help me?  Isn't the Hippocratic Oath, "... [F]or the benefit of the sick according to my ability and judgment; I will keep them from harm and injustice"?  Did I miss the part where it says, "Unless I don't accept their insurance plan"?

No one.  NO ONE can tell me that the health care system is not broken.  I don't care if you're Republican, Democrat, or Independent -- this system doesn't work.

I spent hours today working with my doctor's office -- who is unbelievably frustrated at their inability to get care for their patient based on a pencil pusher's policy -- trying to find someone who would see my daughter.  The nine year old who loves to sing, and dance, and play dress up, and has LESIONS on her BRAIN.

And when I finally called her father to update him on the progress, his only comment was the same comment he made when we found out Quinn needed his adenoids taken out, when his hole in his heart had reopened, when he had to get five teeth removed by the oral surgeon, when Claire needed to get ear tubes put in and adenoids out: "And your insurance is going to cover all this, right?"

Oh. My. God.  The health care system isn't the only thing that is broken.

I'm going to go make a drink. Or six.  And focus on the upside that, when the zombie apocalypse comes, they're going to leave Claire alone.  They don't like the taste of lesion-y brains.

May 31, 2012

Speechless

Today was Track and Field Day for all the 3rd, 4th, and 5th students in our small town in Northwestern Michigan.  It's generally a good time with healthy and respectful competition.  I sat in the stands with some of the other parents, the teachers, and was surrounded by 4th and 5th graders.  Talk does, as talk will at this age, to girlfriends.

But I'm getting ahead of myself... let's go back about 8 years.

Quinn met Amara in preschool when he was three years old.  I don't want to say it was love at first sight, but it didn't take long for them to become the best of friends.  From about halfway through 3-year-old preschool on, it was "Quinn and Amara".  Where one was, you'd probably find the other.

Somewhere over the years, Quinn began thinking of Amara as his girlfriend. Oh, not in the romantic sense - he was too young to even know what all that meant.  But -- she was a girl, and she was his friend, thus -- girlfriend.  So, in the way that grown ups ask five year olds in a teasing manner, "Do you have a girlfriend?" he'd say yes.  Amara was his girlfriend.  That was that.

What Amara was was Quinn's champion and staunchest supporter.  When the gym teacher bullied Quinn, it was through Amara that we came to know about.  She came home crying about how badly the teacher was treating him.  When there was a substitute teacher who yelled at Quinn for standing on a chair, it was Amara who pointed out that Quinn was allowed to do so, since Shorty Quinn couldn't reach his stuff on the shelf without it.

With Amara around -- no one was going to pick on her Quinnie.

My best friend is Amara's mom, Tammi, so we spent a lot of time together as families.  Amara's older brothers, Auston and AndrĂ© were wonderful role models for Quinn and Amara was lots of fun for Claire too.  Nonie (short for Antonino) was great friends with Quinn and Claire's dad.  We spent time together almost every weekend.  We used to joke that we were going to have the Sargent/Alvarez commune and just all live together.

Quinn and Amara in their 2nd grade play 
Mr. Nonie

From L-R: Andre', Amara, Auston

Tammi and Amara

The Three Amigos


The hardest thing about moving away from Minnesota was moving away from this family.  When Quinn and Claire go back to visit their Dad, we always need to make arrangements for them to have Amara-time otherwise the trip is pretty much a bust.

I could go on and on but this video that I made for Amara on her 8th birthday probably explains it best:


Anyway... flash forward a few years to today's field trip.  Quinn was asked if he had a girlfriend. He said yes. They asked if he had a picture. He said yes.  I pulled up a picture of Amara on my phone and showed them. Their reaction shocked me beyond belief.  "Ewwwwwww yuck! She's Mexican!!"  I was stunned.

Me:  "Ummm, no. She's half white, half Filipino."  Them:  "Ohhhhhh gross. That's Mexican!!"  Me:  "Ummm, no. Technically it's considered Asian."  Them:  "Ewwwww, ick, like [an Asian girl in the sixth grade class]."  "I feel sorry for you, Quinn, that that's your girlfriend."

Okay -- really?  This is the private, parochial school in our community.  These are supposed to be the nice kids from the good families.  My mother was actually very good friends with one of these children's grandmother -- I was named after his Aunt.  These are smart kids -- who in the HELL is teaching these children this kind of racial prejudice?

Only one answer here -- it's gotta be their parents.

In the +8 years that Quinn has known Amara and her family, he has never made a single comment about Amara not being white.  I don't think he's ever noticed.  I know he's never cared.  She is simply Amara -- someone he loves.

Tammi is white and Nonie is half Filipino and half Spanish.  It should also be said that they are both gorgeous.  I will never forget the first time I laid eyes on Nonie.  He flew into preschool class late (of course) to pick up Amara.  He was wearing bib overalls and an orange t-shirt that accented his really nice biceps.  This is not an outfit that should have looked good on anyone over the age of three but, I'll tell you right now, it looked really nice on him.  His hair at that time was sort of long and those black locks were kind of flowing behind him.  I gaped at him.  I don't think I'd ever seen someone so good looking up close. 

Nonie is this smiley, happy guy (usually) and he must have sensed me staring at him (likely with mouth hanging open) so he turned to smile at me and say hello.  I believe I swooned. I know I turned bright red and stuttered.

All these years later he's just Nonie and he's like a brother to me.  But that first time?  Oh. Wow.

And even then, it didn't occur to me to wonder what Nonie was.  I didn't concern myself with his ethnicity.  I just thought he was frickin' gorgeous.  Their kids were gorgeous.  We never sat down with our kids and said Amara is half Filipino.  It just wasn't a conversation that needed to be had.

I don't really have any kind of ending to this story.  I plan on going into the school tomorrow and, in my very special Andrea way, raising holy Hell with both teacher and principal of the school.  I'm considering contacting these children's parents, if only to say, "Hey! Your ignorance is showing!"

The year is 2012.  We have a half white/half black President in office.  This kind of prejudice and ignorance is intolerable.  And I hope that you all, dear Reader, are as disgusted as I am.  And if you're not -- I don't want to know you or your children.  Because I have decided that me and my kids are going to be racially insensitive to idiots.