awareness in pictures

I haven't used my real camera since 2012.  The last time I went to use it, I started by looking at the album of photographs previously taken.  I was jolted by a few taken at my niece's graduation in May, 2012.  I quickly shut the thing off and stuffed that camera in a storage bin in the minivan and never returned to it.  I know I've missed out on capturing better snapshots of the kids by relying solely on my phone, but some memories are best stuffed away in a minivan's cubby for awhile.

There's a new ridiculousness floating through the internet in the name of cancer awareness: a no make-up selfies campaign.  Perfectly healthy, happy women snap a photo of themselves sans their Cover Girl, upload it to social media and we all gain awareness of the effects of terminal illness.  It's freaking ridiculous.  Probably more ridiculous than sparkly pink reindeer in the name of awareness.

The no make-up selfies campaign did make me think about my camera that's been in hiding for years, though.  Photo comparisons of myself or other healthy women with and without make-up will not do a damn thing to make anyone more aware of the hell of cancer; so I thought I'd retrieve those memories from the minivan and share a few photos that might.

Here is my absolute favorite family photo ever taken.  This is about one year after Mr. 1inamillion's first chemo regimen.  Yes, I earned my degree with those two little ones and that sarcoma patient.  How victorious are we in this picture?!  







Here is the picture that sent my camera to its two year time-out.  This is Mr. 1inamillion four years and countless chemo treatments later with our beautiful niece Lizzi at her high school graduation.  He passed to Glory one month later. 
A thousand words and a thousand tears could never do this one justice.

Our family photo, six months later.  I'm wearing make-up, but I think you get the picture.

My Straight Marriage

I was only 21 years old when I married Mr. 1inamillion on June 21st, 1997.  He was thirteen years my senior, and we had met just eleven months prior.  We moved to Indiana just two weeks after our wedding, far from my family and even further from his.  Four months after the big move, a big tumor appeared on an MRI....soccer ball big.

Just four months after 'for better or worse' and 'in sickness and health', shit hit worse and we found ourselves knee deep in sickness.  To say it was overwhelming is certainly understating it.  I remember the first general surgeon we saw in Fort Wayne, IN rambled off a list of what might need removed that may have included every internal organ in my vocabulary.  Pancreas?  He said pancreas.  Can you live without a pancreas? That doctor did have the wisdom to know it was over his head and immediately sent us to IU Med Center in Indianapolis.

Awe, wisdom to foresee  over your head before reaching knee deep without the option of turning back.  We didn't have it.  Our eyes were only on a wedding.  We were legal adults (me just barely) and anatomically different, so both the law and the church said go for it.  I remember seeing doctor after doctor, filling out form after form with him and the needle biopsy on that first visit to IU.  It was November and he had a roommate in his recovery room.  An older gentleman who was accompanied by his wife, daughter, and grandchildren, and oh what was this little set back going to do to their Thanksgiving traditions?  I remember thinking how cruel and unfair that was; how I couldn't do this, this is over my head, and shouldn't I be able to at least plan a first fucking Thanksgiving?  Screw their YEARS of traditions.  Not fair.  They had grandchildren.  I would be changing bed pans years before baby diapers.

The first surgery to remove that soccer ball from Mr. 1inamillion's belly was December 2nd.  My parents traveled from Kansas, his family joined us from Texas.  We were the first to arrive in that waiting room and among the last to leave that day.  I remember the OR nurse coming out with updates, and Dr. W...my all time favorite.  He was a teacher, always followed by a group of interns or students and I suspect that's why he was so good with me.  Our first professor.  I remember sitting between our parents, feeling too young and unprepared for the worse and the sickness so soon, but all of the information was being directed to me, as though I was very much in charge.  I had no idea what he would want if anything went wrong, but it was all on me if anything did.

We made some of the best friends in Fort Wayne.  Among them, a gay couple who had been together over a decade.  I remember noting the contrast then.  I was so ill prepared to be Mr. 1inamillion's advocate.  Months with eyes on only a party and romance, I had no idea the decisions he'd make or what he'd want me to do for him.  Sure, we were old enough and our parts were different, but we were SO. NOT. qualified for the vows we made.  Yet we made them and were given the rights and responsibilities for one another, while others more deserving are denied.

Nearly fifteen years after our wedding, things did go wrong and it was all on me.  Cancer had spread to Mr. 1inamillion's brain and I was his advocate.  At this point, I was ready.  Although not a requirement, we finally had what Steve & CJ had.  Years of partnership.  Conversations, companionship, love and care for one another that enabled me to know what he needed and wanted and qualified me, empowered me, to be his voice.  Mr. 1inamillion and I spent years in worse and sickness and made it all the way until death did we part.  We hit all of the hard parts of our marital vows, and not a one of them required us to be of different genders.

Blessings on Ice

We spent this afternoon at our second home, the ice center.  We've been there at least twice a week since last summer.  Thing 1 developed a fixation on hockey well over a year ago that has grown significantly.  I don't mind it one tiny bit.  They both began ice skating lessons last summer and it is the only activity on which Things 1 and 2 agree.  Hockey lessons followed skating lessons for Thing 1, which have been followed by some one on one sessions with a favorite mentor, clinics and now a much anticipated mid-season start with the ice center's house league.  His first game is tomorrow night.


We are there a lot.  A lot.  It's where we celebrated last Easter and where we went on Christmas Eve when the grown up bonus kid was here to visit.   Sunday afternoon holds a drop in 'stick & puck' for the hockey player in one rink and an open public skate in the second for the diva, which is an ideal scenario.  Thing 2 has mastered the claw machine in the arcade and I imagine if Thing 1 didn't show up one weekend they will call from the pro shop to see what's happened to him.  We are there a lot I say, and I really do not mind it. 


As often as we are there, the blessing in it is not yet lost on me.  I don't think there's been a trip in which I don't remember where we were two years ago.  Thing 1 wasn't consumed with hockey facts but worry and fear.  I wasn't shuttling kids to and from an ice rink.  I was rushing their sick father to and from doctors appointments, chemo treatments, scans, tests and hospital stays while the kids bounced between home and Grandpa's.  They weren't mastering new skills, making new friends or sliding freely across ice with expressions of pure joy on their faces and I wasn't present with them to enjoy it.  Yes, there are days that school, work and skating is a challenge to squeeze in or there's a load of chores waiting at home on the weekend, but I am so grateful for it.


I was a little dumbfounded recently to hear a parent say no to basketball because they didn't want to sacrifice their weekends.  I do think I just say yes and try to make things work without much second thought to it.  But if I do give it thought, I want to spend my weekends at the ice center.  I want to watch Things 1 and 2 learn new tricks and slide across the ice with expressions of joy.  My perspective is that I should want to sacrifice my time, as well as limbs and a lung if necessary to see my kids learn new things and enjoy life.  That might seem a bit much, but I spent five years of my life hanging out with people who actually did.  I hope I don't lose sight of that and the blessing is never lost on me.

Sunday school lesson

I attend Sunday school with old people.  I have usually been the youngest in my class, but not too long ago two classes combined and now I am in a room with a group that includes friends of my parents and now also my grandparents.  Honestly I do not always enjoy the new mix.  It would be nice to study with peers of my own, people in a common stage of life.  I am smart enough, however, to acknowledge their experience brings wisdom we'd otherwise miss, and to admit I have unfortunately already shared too many experiences that are only common amongst the elders.  

One thing I've observed is we tend to trail off topic a bit more frequently.  It's sometimes a challenge for my mind to slow down, let go of the focus and have patience to wander along with the conversation.  A couple of weeks ago, class was so derailed I'm not sure any us even knew what the intended topic had been.  I have no doubt, though, the derailment was intended for me.  As the gentleman stated he wished to address the class I was of no consideration to him, but I left believing what he said was meant for my ears.

He spoke at length and began with the loss of his wife.  He then told of a widow with whom he later began a friendship when wintering in Texas.  His spouse passed relatively quickly while hers did not.  She'd made 28 trips to the hospital with her husband and would never put herself through that heartache again.  Personally I'd lost count of my ventures, but I was completely with her on that decision.  Best case scenario, someone is still dying so no thanks.  He said he belonged to a club that believes men should remarry as soon as possible after the loss of their wife.  He's kidding, right?  But they enjoyed each other's company, so he respected her choice and continued with the friendship.  You're eighty-something, so why the heck not?  He mentioned another friendship with a widow after returning home that he didn't feel free to pursue.  His friends within said club confronted him, informing him he was a disgrace to the organization of which he'd been a member for sixty years and should be ashamed of what he'd been doing.  He's fucking kidding me, right?  He's old.  And dating.  So what?  Surely we outgrow this bull shit by eighty.  There's got to be an age that gets you a free pass on the judgments of man and man-made clubs.  He spoke a bit more then he turned to his right, addressed the two men next to him by name and asked if he'd left anything out.  Oh, snap!  He is not at all kidding...I can not believe we don't outgrow that shit by eighty.  He had been moved to tears, and had mentioned the morning's sermon theme that moved him to address our class was 'today is the day.'

I wanted to say to him, thank you.  Thank you for continuing your friendship with your friend in Texas.  I'm only 37, yet I can't fathom the idea of remarrying and taking care of someone to that degree again.  The thought turns my stomach, but I don't believe God intends for us to be alone, either.  I didn't say it.  I was nearly moved to tears, too.  I left knowing that I needed to hear him, but wasn't yet sure what my Sunday school lesson exactly was that day. 

I haven't forgotten it.  Listening to him and his heartache has stayed front & center on my mind.  I needed to hear what her fear had cost him.  Not necessarily the friendships of the boys club...I'm not sure I can call those true friends or a real loss.  But he sacrificed what he desired of a relationship, compromised his beliefs to be with her, supportive of her needs and boundaries.  And her fears and grief.  Here was a good man of God, grieving because of her fears and grief.  What am I letting go of in order to hang tight to my own?  Am I really okay with that?

I don't think I am.  My lesson was that it's probably time to let go of my fears and grief, and let myself risk holding tight to someone else again.  I've got close to another 50 years before I'm eighty-something, so why the heck not?  There are still memories that turn my stomach if I consider the possibility of repeating them, but I don't believe I should allow those to cause a good man grief of his own.  And I don't believe God intends for me to be alone, either. 

on my own

After a few months of new normal, we finally hit our stride last fall and as the lone parent I got a lot more time with things 1 and 2.  With that I started to spot differences and concerns and was able to act without question or compromise.  Partnering with just the kiddos' trusted therapist, Asperger's Syndrome was identified.  As I read through characteristics of AS, a reel of memories flooded through with light bulbs clicking rapidly in my mind.  It made sense to me and I could move forward on my mom instincts for what I believed to be best for my kid, without debate or discussion. 

Obtaining the diagnosis for the Aspie was no doubt easier on my own.  I knew I was right and I didn't have to argue or explain it.  Looking back, I felt awful for how we misunderstood and could have done better by him.  I can learn and adjust, meeting Thing 1 were he's at and needs me to be, but Mr. 1inamillion never would.  I'm still haunted by "look at me when I'm talking to you boy" as Thing 1 covered his face and completely folded into himself.  Those with Asperger's struggle with eye contact, it's a sensory overload that many describe as truly painful. 

I remember talking it through with my therapist.  "So you're feeling guilty.  Wondering how you could have missed it for so long?"  My split-second response?  Oh no, I know exactly how I missed it.  I was driving back and forth to St. Louis all the damn time, bouncing my kids all over the damn place.  Huh.  I guess I'm just pissed off about it.  Yes, this was an instance made easier by now being a single parent.

Our schedule with just the healthy three of us allows for a lot more fun.  The calendar stayed full with church, gymnastics, basketball and hockey games.  This summer, we've bounced freely from the pool, water park, tumbling and ice skating lessons.  And there in lies my first really big frustration with being on my own. 

Thing 2 lost balance on the hockey skates in last night's lesson, fell face first on the ice and earned a big gash to the chin.  The diva does not handle the sight of her own blood without hysterics, and the fear of stitches took her freak out to a whole new level.  It took a lot of coaxing to get her calmed down so the EMT on site could take a look and bandage her up.  After a lot more coaxing, she was finally willing to go let some of 'Daddy's nurses' take a look at it and we headed to the ER where she was determined to not get stitches.  The doctor came in, squeezed the wide open wound which sort of just pushed it inside out, and said "yep, it needs stitches".  Diva began to wail and throw herself around the bed in an effort to make a run for it and this mom began to wrestle.  With my left arm across her arms & chest and my right arm around her knees, I laid across my screaming baby whose chin was being sewn shut and silently cussed the man who knocked me up then died.

This was an instance were teamwork was certainly preferred.  The boy not wanting to hang out in the ER but forced to stay with his one & only parental unit, the terrified girl screaming and in pain....the evening definitely would have gone better with more than just me.  I've never been great at coddling them through a situation such as this.  My way of 'suck it up, think of something else and just get it over with' is not preferred.  I know this, so I do try, but Mr. 1inamillion was better at this kind of thing (I was always kinda the dude). 

I can be honest in my look through the rear view and know that I would have received heavy loads of blame and BS for the broken kid after the fact and without end...but in the actual moment, the kids certainly could have benefited by the presence of their dad and another set of hands would have been appreciated.  I also realize that after the stress of holding it together while your baby is being traumatized, it probably would be nice to have someone to turn to, let out a "damn, that sucked" and at the very least get a hug.