Sunday, May 13, 2018

Mother's Day 2018

She would be nearly 8 ½.    

I’m so detached from other girls her age.    Ever so acutely aware but zero connection to how who they are might relate to who my daughter might have been.   It’s simply too big a divide.  To wonder what 2,920 days of life would have made her into.    Who MY genes would have made her into.   The crushing primal wanting to know who Brad and I could create together still weighs like an elephant on my chest – if I let myself think about it.  Which I don’t, except on days like today when I’m granted the gift of time to myself.  In the reflection of how wildly grateful I am to be a mama to those two crazy beautiful children, today I cannot help but wish for my first.  To play at the edge of the Wondering Abyss.  Flick a pebble in with my toe and, despite myself, hold a flicker of hope that this time I’ll get an answer back that would tell me just one thing about her.    Until suddenly the plane in which I live flips and I’m several feet down the pit, hanging onto the roots, flailing, tears streaming and mouth agape in the same silent scream of horror and disbelief that we lost her.   Forever. 

Not quite as quickly I choose to flip back to my here-and-now.    I don’t want to spend today visiting my old friend Grief.  Today I want to quietly sit in the tender piece of me that holds her always, while simultaneously being fully present to my two living miracles.  I want to soak up every delicious and wondrous moment of their quirks, silliness and gifts.  Of their love for me.  Of their dependence.  Of their belief that I will always be here to tend to their every need.    To bask in their knowing that they are My Most Important Thing.  In all my failings as a mama, my children most certainly know that this house and their parents are safe places to land.   They can be who they are even when it’s hard.   Even Anna.   Whoever she is out there, whoever she might have been here, the Anna she IS has a place here.   I really do feel she has actively staked her claim and space in our family as much as we have done for her.  She lets us know she’s here in her own way…

Oh how I wish for you still, babe.  How I long to feel your arms around my neck as I look out the front window to the house across the street, whose owner is deep into the business of becoming a mama herself right now – at the same hospital you were born.   Her babe decided to come six weeks early, and anxious fear-cum-hopeful anticipation is high in me.  How I hope to be able to tie a giant ribbon of pink or blue around their tree to welcome them home, rather than gather the ragged pieces of her Being into my arms in silent solidarity.   I would not know how to do that if it weren’t for you, my darling girl.  You are how I learned true compassion.  You taught me How to Be Human.  Not that I’ll ever be done learning, but…you have shaped me into a better person despite all my kicking and screaming and railing against the very thought.   I’m still not ready to say you were meant to die.  I’m not ready to accept that God approved this little proposal to give you to us only to take you in those last minutes in order to open me up.   As of now I will ALWAYS balk against my brother’s “God did this to bring you back to him” (Jesus H, what bullshit).    But I do acknowledge, with actual peace, that you have broadened my soul. 

I love you Anna girl.  Deeply, scorchingly, forever.

Saturday, April 14, 2018

She went there

A few weeks ago a neighborhood mama who I've always wanted to get to know better invited me to join a women's group.  Tuesday nights from 7:00-8:30 at a local coffee shop just 5 minutes away.  Women from *ahem* our church.  "Our church" meaning I've gone a few times, my husband has been going regularly of late but apparently joined awhile back because we get tithing envelopes in the mail monthly.  He actually asked our neighbor to invite me because he knows I'm lonely, need community and I'm guessing is secretly hoping developing friendships with these women will get me to church more often.   Whatever.

I went to the group though, because I AM lonely and I DO need some friends and I'm hoping this will foster a true friendship at least with my neighbor.  There were only 4 women the first night including me.  Three the next week.  Seven last night, including one brand new gal.  I'm feeling optimistic, as over half the women have children the same age as mine, and one is at least as old as me, so looking forward to hearing her story and commiserating on the whole advanced maternal age factor in parenting.

So last Tuesday, one of the seven was a woman who has been a member of the church since birth and clearly knows the ins, outs, down and dirty, projected reputation and internal reality of the church's goings on.  Basically, don't cross her.  Let's call her Casey.  Casey also just gave birth to her first child 3 weeks ago.  I'd heard about her in the previous meetups and knew the pregnancy had been at risk, with a rescue cerclage at 22 weeks, bleeding at 25 weeks, bedrest, etc.    But baby arrived at 39 weeks 3 days and all is well.  Last night she relished in the attention, the questions about new motherhood, and the 'poor me'-ness of sleep and caffeine deprivation (the latter due to breastfeeding).   I held my tongue.  The brand new gal to the group announced she was 16 weeks pregnant with her 1st.  Well.  Casey jumped all over that with loads of authoritative advice and "oh get ready for..." comments and I pretty much wanted to vomit.

But more than that, by then I'd already been consciously breathing through post-trauma anxiety for several minutes.   I hadn't traveled through this particular territory in a long time, meeting new people.  I'd forgotten.  People who don't know me or my story, how these first interactions are riddled with silent questions of "Will there be space to tell you about my first child?", "Will you allow my dead daughter to have a life in our relationship?", "Will you accept me as a person who can laugh and enjoy the life I have but still grieve?"   Used to be I dreaded meeting new people - uptight, a stone's throw from bursting into tears, getting out of there even a wisp of passing for normal was victory.  So a a few days later I realize that not having thought to be nervous was actually significant progress!  Some might even say 'healing'.  Except I hate that word.  There's no healing, only lessening.

Anyway, this lady's talking about her healthy baby boy and all it's trimmings took me back.  To the OR, to the silence, to seeing her for the first time, the doctor dropping her arm on the table to prove she was beyond saving, sobbing on my brother whose first newborn was safe at home, all of it.  To my milk coming in.  To spending weeks in my pajamas staring at nothing at all.

I had nothing to say to this woman.

Plenty to say to my baby loss mamas about her over-the-top advice, her barely contained smug demeanor, and authority on all things baby after being a mother to a living child all of 3 weeks.   Still, I sat there with my fists pressed against my lips, doing my best to keep a neutral expression.  But then, she went there.  During the official ice-breaker when we were asked to give our biggest success and biggest challenge of the last week.  Guess what she says?  Yep.  "My success is keeping my tiny human alive for 3 weeks..." Cue laughter and jovial 'oh yes, it's work!' and all the rest.  I *almost* excused myself.  But was able to stay in my seat knowing I could vent here, to you all.  Oh my god. 
Naive people.  I can hardly bear smug, naive people.  Yes she had a challenging pregnancy.  But she comes across like her son was a sure thing, now that he was here.  Would she someday know what it's like to get a call from her baby's daycare saying her son is on the way to the hospital by ambulance?  That he suddenly stopped breathing in the arms of his caregiver after a bottle?  Arrive to the hospital and learn he was gone?  Would she walk into his room someday and find him still, blue and cold in his crib?  I know these mamas.  These mamas are never smug.  These mamas are humble, yes, exhausted, exceedingly grateful, but always with that unspoken hint of anxiety, not knowing if whatever anecdote or experience they're discussing as a mother of this particular child might be their last.  They know nothing is a sure thing when it comes to life.  And death.

I know, I know, I know I know I know.  She's a fine person, a perfectly normal, probably good-hearted, giving person.

But I don't think we're gonna be friends.

Friday, April 6, 2018

Morning Glory

It's 7:13 a.m.   My 2 1/2 year old, whose bed I slipped into somewhere around the 5 o'clock hour to keep him sleeping in his own bed the rest of the night, woke me up less than 15 minutes ago by sticking his fingers up my nose.  After sticking them up his.  On repeat.  Until he saw his favorite person leaving for work through the crack in the door and ran out to say goodbye to his beloved daddy.   Immediately thereafter he stomped back in and told me it was morning time and I need "to put th-ome pant-th on".   After sliding on the pair he chose for me, a gaudy version of mama-fat-pants-stretch-leggings (thanks buddy), I rolled out to greet the newly risen sun.  Thank god for the sun.  This freaking Minnesota "spring" come longest-winter-ever is k-i-l-l-i-n-g us all.   In the next 5 minutes said 2 year old has played two rounds of Pie In The Face because whipped cream in the face is always hilarious, no matter what time it is.  And my 5 year old with crazy bedhead just asked me to tell her a story.  Her favorite thing, which also happens to be the thing I just never feel up for.   Who can be creative when they're exhausted all the time and using all their oomph for appetizing lunches and figuring out what to do with the 2 year old all day, I ask you?!

It's all a lot to ask before coffee.   A lot.

Normally this kind of start to the day would make me feel cranky and trapped.  Again.  But today...   Maybe it's the sun.  Today I just feel grateful.  Grateful to be their mama, grateful to be the one they feel safest with, grateful for the ordinary-ness of it.  Mundane is the new glorious, you know.  At least for those of us who have ached for ordinary when our world turned inside out.

So guess what?  Today I started a new story.  For my precious girl.

After coffee in hand, of course.

Thursday, June 29, 2017

Let The Games Begin

Not quite 2 weeks after the PSA that came back elevated, a second reveals it has risen 0.03 already.  Now .25.  Quick for prostate cancer.   Pelvic MRI tomorrow, consult with radiation oncologist next week.  Meeting with urologist after results of MRI are in.  Dr. Knoedler, the urologist, is well-reputed and has a relationship with Brad's brother (prior to Brad becoming a patient) and to Brad himself outside of this.  So Brad feels good about the doc not thinking of him as 'just another patient'.   But honestly, I know my young patients at the hospital stick with me,  I'm pretty sure Brad's situation would stick with Dr. Knoedler regardless.

We had gotten to a pretty good place the last several days.  Matter of fact, feeling like we can handle radiation, staying present with all the goings on here (my parents visit, Cate's birthday).  But this conversation rattled us both.  Words like "aggressive, concerned" and "50/50 chance".  We were told there was a 50/50 chance the cancer would return in 10 years after radical prostectomy.   It's been 2 1/2.  Now we're being told there's a 50/50 chance radiation will kill it.   I'm sorry, but WTH?!  I would have thought radiation would have a greater return, you know?

I had written a slew of fearful thoughts here, along with a few other negative-ish comments throughout, and this morning am editing and deleting them, while still trying to stay true to the situation.  My beloved friend, a ridiculously wise and powerful Type I diabetic who has undergone 3 organ transplants, multiple heart surgeries, lymphoma, a myriad of other issues and oh, is also completely blind, strongly encouraged me not to write down the specifics of my fears.  Writing them down, having others read them and react in kind, all that only draws energy to what we don't want.  Stirs up the universe's creative energy in the wrong direction, you know?

We will always think of this in association with Cate's 5th birthday, no matter the road from here.   Certain events creating the Before-s and Afters of our lives.  Before Anna, After Anna.  Before living children, After.  Before....After.   I've been through enough of life to know it never stays the same, there are unforeseen surprises and scenes you dare hope for that come true...and ones you pray never do.   My mother's response to Brad's news was to say something along the lines of "How much crap can happen to one family?"   But my answer was "But so much good has happened too.   Cate, Matt.  Our home, Brad's job, everything about the last 5 years.  This is Life.  The good with the bad."

I believe radiation therapy will give us time.  I'm going to hold the vision of a very, long, time.

Please join me in that vision!

Wednesday, June 21, 2017

How 0.22 can change your life.'s back.


It's an infinitesimal number, really.   Teeny.  One would think, inconsequential.

Except when that number is supposed to be 0.00, or "undetectable", as it has been for the last 2 1/2 years.

Yesterday Brad found out his PSA level was 0.22.  An elevated hormone showing up in his blood from a piece of his body that's no longer there.  Which means one thing.

Cancer is back.

His urologist is out of town until Monday and so we won't know his opinion or next steps until at least then (which is also the date we're throwing Cate's 5th birthday party, so that won't be surreal at all).  We suspect another blood draw to re-test and a bone scan to start.  The hope is radiation to the surrounding prostate tissue and that will be it.  Done.  Onto gymnastics lessons and hockey and plays and all those ordinary moments that make life extraordinary.

Last night I felt like I was sputtering and in danger of drowning on oxygen, very nearly sending out a cut-to-the-chase email to our tribe.  That knee jerk response of wanting to know you've got people holding onto your hand just enough that you can keep your face above water.  But maybe in a show of slight personal development, I didn't and decided to write here instead, as those who read this are the ones who can probably handle me at this early stage and throughout whatever is next.

Shit, you guys.  Just...all the swear words.