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.

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.