Lists

In the past three months which of the following are true:

1. My oldest daughter got diagnosed with a, as of yet, untreatable and aggressive (statistical anomoly) form of Hep C with a genome type linked to cancer
2. My mom was in four hospitals in ten days - two different ICUs
3. My youngest daughter was tested for lymphoma but dx with an illness only found in the NIH's Registry of Rare Diseases- a disease that has no know treatment
4. My dad had a stroke

And there was one or two other comparable events, but they are not mine to share. Yet, they shook me to my core. I have found people come, and people go....

Do I dare
Disturb the universe?
In a minute there is time
For decisions and revisions which a minute will reverse.

Daily Absurdities

“What is too absurd to be believed is believed because it is too absurd to be a lie.” 
― Robert Jordan, Lord of Chaos

My life is a study on contrasts- or maybe its just what existence is.

I woke early to read emails - what working Mom doesn't? And then quietly walked down the hall to crawl into my eight year old's bed to snuggle her awake. The day before, I had worked late and far away, and had gotten reports of naughtiness and then recieved insolent statements from her when I called home while stuck in gridlock.

In the early morning light, I rubbed her back and she smiled up at me upon waking to see me sharing her pillow.

We talked about the day before and what was to come. I held her and let her know how much I love her and then meted out the promised punishments of lost iPad privileges and suspended playdates. After some time with just the two of us watching the gray light of dawn warm to gold her 6-year old sister, Lala,  joined us in the small bed on the sun porch and we laid piled next to each other talking about the day and the week to come.

Sour dough toast for breakfast; what to write a homework essay about; which socks to wear; and who got to the dog's leash on our walk to school that day.

Today was the one day where I was not traveling for work. It was the one day where I could, if I played my card right, get Lala's feces to the Children's hospital lab within the 60-minute window the latest test required. The only problem - Lala's refusal to "let people see my poop".

The negotiations were beginning to span weeks. It had been easier to change language in a World Health Organization resolution and get it approved by the reticent Executive Committee - than to get my six year old to poop in a specimen jar. I kid- not!

And so it goes - these days of mine.

Suspending Disbelief

Just for the record, other than a rather circus-like ability to lift heavy things, I am not a strong person.

Lately, life has been a litany of hearing "you are so strong"  - "no, no, I am not!"

I walk the kids the mile to school, and I suspend my disbelief, to check for fairies under leaves and to talk about what color the door on our gypsy wagon should be - the world around us our kaleidoscope color swatch.  The dog tugs at her leash to chase squirrels; we find 'treasures' street-side; today an Arabic dictionary and old toothbrush holder; and we talk about why the stars twinkle.

That is not strength. Seriously, what else is there to do?

My husband lost his mind (in an agonizing and costly labyrinth of mental illness) and then disappeared very suddenly leaving me a sole supporter and single parent to traumatized little girls; I was bed-ridden with a terrible spine injury; my one daughter left remission and has a currently untreatable (sans a liver transplant) form of Hepatitis, courtesy of her birth mom; and my other kid (already definitively special needs) has something that acts and looks like cancer, as yet to be diagnosed, due to said other special needs making testing close to impossible.

Its life lived like a trauma version of an add-a-pearl necklace.

These things don't make me strong.  The fact that I am still here does not make me strong.  Its a misnomer that tragedy engenders strength.

Tragedy-  just is.

Last night I debated the nature of suffering.  I don't believe there to be a hierarchy to pain.  Suffering is suffering - the source does not actually matter other than what recourse or action is to be taken.

My suffering not greater than any other. Sick children are not a tragedy trump card and I refuse to play that hand. I am not stronger nor nobler than anyone else. I merely am.

The Gods will Smite You

The funny thing about life is that I used to feel sorry for myself that my former husband; father of my two girls; went unexpectedly crazy and disappeared.  Before I realized what was happening, I was angry, then sad, so very sad.

It was kind of like a car accident that had a slow and long skid that ended catastrophically in the cement median. The kind where you still have hope, until the final impact, that you can right your course or somehow walk away unscathed.

I used to think "that" was a great tragedy- losing him; that vibrant, gentle, creative man who once hand cut 100-mermaid tails, glued sequins onto them, and then attached them to the top of half of dolls to make me a chain of mermaids as part of a larger surprise party in which our rickety victorian flat was transformed into an enchanted underwater world filled with my best friends.  The same man who later in our marriage, on one valentines day, suspended handmade hearts from the ceiling, one for every week we had been together - they fluttered like red and pink butterflies in the candlelight. I remember how the champagne tickled my nose and I felt so incredibly blessed.

I used to think seeing the pain of my girls -- in losing him without notice to his battle with mental illness - and the struggle to heal them while making financial ends meet - was among the worst the gods could smite me with.

I had no idea. That seems so bucolic and naive.

The ante was upped when my one sweet bright light of a girl was suddenly no longer, and rudely out of, remission. It got worse. There is no treatment right now. Well, there is one, its works less than 22% of the time and is incredibly toxic with horrendous side effects and involves three injections a day -- for almost a year. And still- I had hope- the new drugs; the lauded new drugs.

Then we (I still say we- as if I don't journey this alone) found out there was not enough time for her to wait until they were tested and released for use in children.  And still - hope again - perhaps a place in a clinical trial even though at seven she will be the youngest in such a trial.  I hold that hope and don't think beyond it.  That is where this tragedy ends.

That seemed the worst thing.  Until my other girl got sick. I comforted myself with the adage that lightening does not strike the same place twice. That no one gets two kids with completely unrelated, different life threatening illnesses.  Hubris.

I wondered if it was hubris.  Did I somehow smite the gods? Did I bely some form of parental morality in believing it would somehow all be OK - even though its been so not?  Was my insistence in keeping childhood magic alive enraging to the shadows of the universe?  My psychologist assures me "no".  There is no cause and effect in these cosmic accidents - where two children become horribly ill from differing and unrelated causes. Two accidents of the cells as it were.

Its the period of the unknown. This the period where I read blood counts like tea leaves trying to predict a future unknown. Genomes and superstition blend into long nights filled with quiet tears and troubled sleep.  And I wait, for the final verdict, trying to read the signs knowing those are futile efforts to make meaning of a world I know longer understand.

Pillow as Base

Single parenting is not for pussies.

Its funny because I am a bit of a pussie and I mean that in the best way possible - no pussie shaming here.  I am a girl's girl.  The only machismo I muster is when I approach the barbell.... the rest of the time its glitter, heels, and false eyelashes.  I have always had the belief that I can best manifest my butt-kicking-amazon status visa via making sexism work for me. That said - I am not about using the master's tools.

I am happy  that the word "woman" has a "man" in it - not an issue nor any need to change the spelling to "womyn".  So like I said, not pussie shaming- but celebrating - I love being a woman. I love being a strong woman. I love lifting heavy, running far, crafting policy in a man's world and wearing high heels and leaning into my own femininity.

Just acknowledging - that I am not someone who is cut from the single parenting cloth. Those men and women are far nobler and more skilled than I.  My hat is off to them- each and every one - I am not clear how they pull it off.  I feel like I often limp to the end of each day like a hobbled runner trying to cross the finish line. My pillow beckons as a form of base - when I hear the kids' snortles - I am "free" - except for the nightmares and physical ailments that plague them.

Its been nights of shared beds and pain-filled wakings...  It appears now that my "healthy" child may have some odd immunological ailment...  we go in for testing next week.... conveniently prior to the pre-clinical trial hospitalization of her sister ... in the meantime she wakes every few hours sobbing in pain....

And the days - oh lord - the days... today was so bad its comical... I know that in addition to the medical issues- my girls have other frailities... lets just say it was a day to re-read Viktor Frankl and to try to not react to the seemingly endless parade of acting out antics.

I failed miserably.  And yet, I choose tomorrow as a new day and a new opportunity.

Gratitude - August 1st

"The difference between a comedy and a tragedy is that in a comedy the characters figure out reality in time to do something about it."

Bennett W. Goodspeed

The past few months have been instructive. Like a life primer of 'the good, the bad, and the ugly'.

With great tragedy comes great insight, amazing opportunity, and revelations about the people we  love and call friends. And in my case, tragedy has wrought amazing amounts of laughter and love and even more friendship.

In mid-May we found out that the Commander was no longer in remission. In early June we found out that her disease course had become aggressive. Later in June, we found out that the only approved treatment for her particular condition was effective in less then 23% of all children, required three injections a day, and would crash her immune system - the hoped for "new" treatment had never been used on kids and would not be ready "in time" for her.  In July, we hit the clinical trials trails while enjoying summer pit fruits, camp filled days, and long evenings of tangled tan limbs; languid bodies akimbo as our as little family convened nightly on the life raft of my bed to share songs and stories. And that brings us here- the opening days of August.

We wear soft tee-shirts and look at photos from before - totems of the world just over a year ago when the girls' dad was still among us. I see what my body looked like before a year of "bed rest" and plumping steroids - from athlete to invalid.  The girls comment on their dad's kind smile captured in pixels.  And what used to be, simply "is".

These are the best of times and the worst of times.  People have been amazing.  I have always believed in, well hoped for, the inherent good and potentially benign nature of the universe. For the most part, I have not been disappointed and moved time and time again to poignant tears and happy laughter by the embraces, literal and figurative, of those I am lucky enough to call friends and share community with.

I expected to be more of  a  pariah of misfortune - outcast -  fears of the contagious nature of cloudy kismet - a form of kharmic ebola to be feared and fled from.

And I understand that, because really, who loses a co-parent, suffers a spinal cord injury, and has a kid come out of remission all in 12-month period whilst juggling the medical fragilities of the other child, running a business and going about the business of living?

I worried that it would all be too much for people who knew and loved me.  And for some it was - unexpected and sudden withdrawals from daily contact to still silences with nary a word or a goodbye. A bit, I imagine, like driving a country highway through bucolic and sun dappled beauty to be suddenly, and without any warning, consumed by an unseen sink hole.

But like the beautiful quote by Oliver that references the box full of darkness, in those losses, I have found gifts. The spaces created have been beautifully filled. More strikingly, than those lost, are those found.  I have been found by a tribe - amazing individuals who unbidden step into the shadows, that fate has cast, to bring the warmth of light and love and to travel with our little family.

“Lying is done with words, and also with silence.”

I pretend like everything is OK - because it's what I want to believe.  And most days it is.

But then there are moments, like today, during the ultrasound at Children's Hospital watching splotchy images of my daughter's liver pulse on the screen in the darkened room --- and it's not -- it's really not OK. I listen to her laugh at the technician's jokes as he runs the wand over  and over her taut beautiful belly capturing our future into digital format - tea leaves in a cup.

And suddenly as I feign delight, along with her real joy, at Sponge Bob's antics on the screen above the gurney - I want weep.

It feels so familiar to be in the ultrasound room with it's Nemo decals, soft lighting, and the incredibly kind staff who minister not just to the sick kids but also to the frightened parents. It feels so different to be alone in those overwhelming moments of the not 'knowing' if our borrowed time has finally expired.  If this is the scan where the alarms will shrilly erupt.

I smiled down at my golden child, to realize she had already forgotten that her question about why her dad was not with us - went unanswered.  I remembered how, before the "disappearance"during these scans, behind brave smiles the two of us used to surreptitiously squeeze each other's hands like a superstitious childhood 'pinkie promise' against our fears.

Today, I found myself silently wringing my hands as if to find a memory of that comfort between my own cold fingers to realize my silence was ending.