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.