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.)

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.

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.