Dejah, The Warrior

This is a re-post for my dear friend, Glo, in tribute to the amazing life and soul of her baby, and their loved ones. It’s hard to believe it’s been 5 years. Already. I can’t say exactly how it feels for Gloria, Robert & Rayne, but I would like them to know we remember with them. We share in their heartrending memories and in support of their amazing capacity to move forward in strength, purpose and love for each other and for life. They couldn’t live a better legacy for their son and brother… 

I hardly know this young boy who impacted my life and so many others so profoundly. What kid is all that interested in their mother’s friends anyway? And so, I came to know him mostly through her, our Glo.

She is that quintessential statement of strength and courage, which can almost sound like a cliché, but it isn’t when it’s applied to a parent facing one of our worst fears.  Which is what happened to her and she, true to character, faced that nightmare fully and head-on.

He was only three years old when they were told he had cancer.  It was horribly bad news.  Most kids who get this kind of cancer have a pretty good outlook, but for some the challenge will push  to the limit.  This was to be the case for him.

I can’t imagine having to look at my baby’s sweet innocent face, and into his trusting eyes, knowing what they knew was to come for their son, and try to prepare for that.  How unbearable could it have felt to know the awful truth of what was in store in some ways, and not have any idea or certainty about anything else?

The only thing that turned out to be absolutely certain is that this kid had something else too – a hell of a fighting spirit. Those innocent eyes masked a strength that could rival a grown man’s, and that was good because he used it fully. It was what carried him beyond the lines of expectation.

As it turned out, his backup arsenal was also beyond outstanding.  His shield of steel was the love and faith of his mother, and his dad and sister were the center of his phalanx.

Phalanx is a perfect word for his story.  I’d stumbled around for a while looking for a way to describe all the people who joined the power of this boy’s circle. My son said, “That sounds like you’re talking about a phalanx, mom”.  I asked what that was exactly. After he explained, I thought yes, that’s exactly what they are.

A phalanx is defined as a compact or close-knit body of people, a formation of infantry carrying overlapping shields and long spears.  Perfect.  That’s what they were – overlapping shields of love and spears of hope. The rest of that foundation was formidably filled out by all the family and friends who rallied around them.

No matter their role as those weapons of love and hope, every one of them, including the calvary of determined medical personnel was there in common spirit.  All were there to throw everything they could at that God-damned tumour.

They did it well for ten amazing years.  It wasn’t a smooth trip for sure, but they fought those ups and downs with purpose. He and his family were also determined to instill something meaningful into what would seem to be a senseless, painful ordeal.

He moved to the center of an organized effort to finally stop cancer in children.  He and his family charged alongside an organization called Kick For A Cure, whose role is to fund the research that will finally “kick cancer where it hurts”.

Part of the fight for a full life was trying to be just a boy who could play and learn like everyone else. Why should any child have to fight to be just a 5 year old or an 8 year old? The balancing act to just be and to be a helper in the bigger picture becomes another unexpected fact of life, a new normal.

The day came when balance was made impossible, and it became an effort to just hold on – to a few more hours spent wrapped in the bond of fighters who’ve survived together for so long.  To a few more minutes of saying I love you, and for that one more heartbreaking second to look into each other’s eyes.

When children get so sick, when they die, we are all devastated.  We cry and feel deeply because for those moments, born to us or not, they all become our babies.

Maybe we ask God or the Universe, why or how?  Maybe one day we’ll have all the answers, but for now, at this moment, I need to believe that the Universe said these things to him:

Thank you, Dejah.

Thank you for enduring the pain of the fight for so long.

Thank you doing for so much work in such a short period of time to inform and teach about childhood cancer.

Thank you for all that you’ve given and taught to your mom, dad, and sister.

Thank you for all that you’ve given and shown to your family and friends.

Thank you for the sacrifice you gave to medicine that will one day make this illness less devastating for another child.

Thank you for the way you brought your community together over and over again, and got them all thinking about love, and for reminding them that, it is the only true purpose.

Your work is done Dejah, and it was done in superhero excellence.

You’re finally pain free; dance wildly in joy.  You’ve earned it, kid.

You will always, always, be a kick ass hero.

Dejah Milne
February 4, 2000 – October 5, 2013

dejah

Photo by Cher Milne Gennaro‎, Memories with Dejah

 

RL

_______________________________________________________

The story of how Dejah affected his community and the people around the world was captured during his beautiful service tribute and in how his story was shared around the globe.

 

Tales From The Heart: Dad

Nova Scotia, July 2017

Of great character
Lovely men earn the prizes
Strong and gentle wins

Cowards wilt in their presence
Fight or flight; laugh while they run

Haiku / Tanka

 

I’ve written a few times about the days of my childhood, when my mother was alone or alone within the presence of an abusive man who tormented her and her children. I’ve even written a bit about that broken man. Yet, I’ve never been able to really put down a word of meaning about the man who would ultimately become my beacon of manly decency, the barometer for all who’d follow and be measured against.

No matter how hard I tried to write a nod of love for Father’s Day or his birthday, whatever event, I would draw a blank or the words I put down felt far too much like a eulogy. Even when I wanted to relay one of his famous tales of hilarity, I’d cringe at how much it felt like I was standing at a funeral lectern; the same feelings washed over me as did when I delivered a eulogy for one of his grandchildren.

Then, this summer holiday, during our annual events of hugs and dinner talk, huge laughter, day trips, familial eye-rolling impatience, and intense political arguments that look like someone’s about to get offed, I entered epiphany territory. If I didn’t say these things now, for him, to him, ultimately my words really would simply become the very thing I feared.

So here it is, not a “Happy Something Day” anything. Just a summer hug to my dad, who as a step-father, stepped in it and all over it in his own inimitable way, to become the embodiment of what a man of decency and character should be. Whose heart was far bigger than he needed to shelter us. Whose protective and respectful love is genuine and unreserved.

He’s shown how it’s done after screw ups. Oh yes, he’s definitely a pro at screwing up, BUT he’s equally adept at employing his best to undo his infractions. His apologies are quick and he fills the holes of his failings with triple the ratio of acts of kindness. I’ve never met a man who wants to make up for his failings as badly as he. It’s one of his most admirable aspects which has repaid him with enormous, widespread respect.

Outside of that, he’s your basic straight shooter, what you see is what you get, and certainly honesty is a key attribute. Well, unless he’s got a story to tell. There’s no doubt he’s got a blarney bone floating in there, but that’s just one more lovable trait, right? I’ve not met anyone yet, who can tell a tale with his level of wit and witty circuitous routes. That’s bonus material right there.

Tin man 7.jpg

Oz never needed to give this Tin Man a heart

And so, if all this isn’t the embodiment of good character, what is? His shoes will always be a bit of a loose fit for someone to fill, but that ain’t no complaint by me. Damned certain neither of us will ever make apology for that. I hope when he sees this note, he’ll feel my respect too. Maybe he’ll even have seen something that surprises. Whatever his feelings, I do know I’ll get a hug not long after.

Thanks, Dad.

RL

Stuff I’ve Learned – Mostly the Hard Way – and I Have the Scars to Prove It. [Hindsight|The Daily Post]

A few years ago I re-joined the ‘Critically Facing Your Mortality Club’. It’s an event that can sort of become semi-normal when you’re challenged with a chronic health issue; in my case, a rare disease that defies prognosis attempts. I know to prepare for some difficulty from time to time, but I wasn’t ready for the words that this time, my life was down to literally, minutes.

Just before I was wheeled into surgery, I was allowed to call my mother to let her know what was happening and to potentially say goodbye. She told me later, she was too shocked to do anything, but slide to the floor. I was good with just being put under -anesthetically.

Clearly I made it through, but at the time, along with an urgent need to update my will, I was desperate about the still very real possibility that I would not be around long enough to teach my then 8 yr. old son about the facts of life.

mom and babyI had so many plans in store to show him how to navigate this world using shortcuts I’d earned through many moments of angst, sweat and heartaches. How could I spare my baby even a bit of this painful journey? ‘Cause, there it was – that in-your-face reality that I couldn’t take for granted the kind of time I thought I had, to show my boy how to live life a little more successfully than me.

True to form, I immediately tried to take notes of my thoughts. I went for the sort of inspiring fashion of ‘Tuesdays with Morrie’ by Mitch Albom or ‘The Last Lecture’ by Randy Pausch. Unfortunately, I was seriously impaired by heavy narcotics, a web of wires and myriad tubing, and some seriously constricting leg compression things from ankle to hips. I’m sure I could have written something under the influence, but writing while prone did me in. Figuratively, that is.

Following two months in the ward, my panic induced lesson outline was further inhibited by long recovery, and then distracted by the less galvanizing daily details of getting back to raising my boy and making a living. Also, it’s really not easy to write like, nor as well as, Mitch Albom and Randy Pausch.

Eventually I did fill out my notes and I’m sure that I will keep adding to this list of hard won wins, at least I certainly hope so. I now consider myself a member of the ‘Don’t Take Life for Granted for Real Club’. I am more hopeful that I will help my son and perhaps someone else to shorten a bumpy ride to success. Maybe someone will smile in remembrance of also winning one or more of these lessons.

If I don’t make it to the end date that I have in mind, my son will have a small record of what I would like for him to succeed at. True, it may not be as eloquent as my inspirers, but if it makes the point…

29 Lessons Learned Over & Over a Lifetime

1. Make your life as big as possible – create for yourself many areas of interests and friends. If one piece of the pie breaks down, it’s not the end of the pie. Don’t worry, the missing piece will eventually get filled in, usually in a better way.
2. READ – please always find out what’s happening around you. Learn something new regularly. Reading is decent, enlightening, uplifting &/or heartrending entertainment.
3. You will often be judged, or more likely misjudged, by the way you spell. So learn this and grammar, as much as you can. Spelling & grammar nazis are dying over this post, this very minute.
4. It’s a fact that helping someone else seriously chases away your serious blues. Volunteer for anything. Often.
5. Laugh. Laugh as often as you possibly can – yes, even at a funeral, & especially in a hospital. Know funny.
6. It’s OK to not know something. Don’t be afraid to say I don’t know, (don’t overuse it either, that’s laziness). You can’t learn anything if you spend your time pretending that you already know it. You don’t make great friends doing that either.
7. Don’t lie too big or too often. Let’s face it; we all lie at times to some degree, (yes, your new crazy paisley suit does look um, interesting, boss). If it is indeed relevant, tell the truth. Your heart will know when.
8. You have nothing if you don’t have your word.
9. Behave honorably. Live with integrity. You don’t have to believe in Karma to receive it.
10. Believe in something. Whatever you decide it is, it must be something bigger than you. Universe, God, a cause, a calling to be better in any and all ways.
11. Try to keep your thoughts to yourself for a bit before blurting out something questionable. Oh yeah, sometimes this one hurts – especially if you have to bite your tongue hard. Bite it anyway and reward yourself with a piece of chocolate later. Definitely tastier than crow. Or tofu.
12. Keep any promise you make, so please, don’t make promises lightly.
13. Did I say you have nothing if you don’t have your word?
14. Make sure that you are the friend, lover, spouse, boss, employee, in-law that you want those people to be to you. (If you honestly are and they aren’t, wish them well and walk away – far away if necessary). Both of these steps take practise. Keep practising. Forever.
15. It’s not your job to change anyone. If someone likes how you live, they will follow your behavior and/or adapt it to their own needs if and when they want to.
16. Be very careful about what you say about someone you don’t know. That stranger you just talked to about the jerk down the street is often a friend of the jerk; that twit you flip off in traffic could quite possibly be sitting behind the desk to conduct your next job interview. We say it’s a small world for a reason.
17. Fact check! Make sure you know what you’re talking about. Otherwise preface your statements with, “I heard somewhere”. It turns out that ASS.U.ME saying is absolutely true.
18. Ask for help. You can’t do it all on your own – even if you insanely think that you’re supposed to. That drowning sensation is an accurate cue to ask for help.
19. When you are really stressing, really upset, check yourself to see if this is something that really matters. Really!
20. Apologize when you mess up-which you will if you remain human. Don’t beat yourself up, at least not for too long. Fix what needs fixing. Learn how to not do that again. Carry on.
21. Admit when you are wrong. Own up to it, apologize; gain respect.
22. Don’t try to act cool. You may think you’re getting away with something through some fast talking, but the people around you are definitely employing point #11. Trust me.
23. Deal with what is, not what might be, what may be, what could be. Use the mights, mays, & coulds for emergency or event planning.
24. Be thoughtless… for 10 minutes a day, be still in mind and body. It re-sets your brain. It calms you, and opens up your creativity, sound judgment, and perception abilities. This could be the most important lesson of all.
25. Be wary of appearances. Especially true today with the changing principles of appropriate daily wear. That skateboarder could very well be a Facebook creator and the biggest thieves and crooks wear designer suits.
26. Treat everyone with courteous civility, but wait for them to earn your respect.
27. Eventually, the burned rice marks will fade from the bottom of the pot. Same with scars and fears – if you face them. If needed, hold someone’s hand through that too.
28. Not everyone will like you. Doesn’t matter. That’s OK. You matter. Just continue to live as upright as possible. You will attract people with mutual character. That matters more than popularity. Character will have your back. Popularity will run for the hills the minute your world has some clouds.
29. Read ‘Tuesdays with Morrie’ by Mitch Albom or ‘The Last Lecture’ by Randy Pausch.
30. OK, I lied, there are really 30. Say I love you every day. I love you, son.

Postscript: Said son informed me that he liked this note, that it was: “A good job mom, almost as good as my goodbye card that I made for Eric”. I see that I am doing well on the esteem building side of child rearing. Lesson learned.

RL

Written in response to the WordPress Daily Post challenge to re-write our first posts.
https://dailypost.wordpress.com/dp_prompt/hindsight/

Songs of Small Town Mothers and Daughters

Once in a while, my mother plays for me an old country song called, “Idol of the Band”.  One of the chorus lines speaks to a brief bittersweet period of shining glory for a young woman from humble beginnings.

sheet music with red rose sepiaWe always have a little laugh with it, but within the mirth is a little wistfulness too. I think that song reminds my mother of a funny moment or two from the bad old days. I share those feelings, but I also feel traces of poignancy that can’t quite be defined.  They are flashes of the heartstrings that join us more by fate than by our blood.

I’d heard forever that I am my mother’s daughter.  I look a lot like her, and I put her temperament on display now and then, but that was the absolute limit to the comparisons that I was determined to live out.  I loved her, but I had every reason not to repeat every aspect of her life.

My mother was that young small town girl that did not dream of escape to the bright lights of the big city.  Maybe she’d become a nurse, maybe even a nun, but in the end she longed only for a simple life of family, and hearth and home in the same little town. As it always is, it was about a boy.

Her dreams were devastatingly reshaped when step one of her plan led her into the arms of that handsome young man who soon became an abuser who drank too much.  Step two in the unintended reality was giving life to me, and then pulling me along on the path to their hell.

By the time she left him, I’d already learned a lifetime of what not to be. There was no doubt that meant being everything my parents weren’t.  What I had no way of knowing then was how deeply the sins of the father and mother had already been woven into the fabric of my future.

Like my mother, I was mostly raised in small towns or a very insular sensibility within a city. Maybe partly because of that I grew up craving the promise of anything but simplicity.  I was going to be one of those bright lights in the city. I intended to be the people I saw on TV or read about in books about success.  I used the same success examples my mother did, but unlike novels of romance, I was not going to depend on a man, or have babies anytime soon.

I was desperately eager to be in that new life.  Desperation was probably mistaken for boldness and so, at almost sixteen I went off in search of those bright lights. I hugged my mother goodbye.  She armed me with a little money, those lessons well learned, and a crock pot.

The years to follow were harder than I could ever have imagined. I began them by piling on loads of makeup and lying about my age to be able to work long days analogous to slave labor. When the realization grew that I could be stuck there forever, I added night school to the schedule.  It took years, but eventually I got my business titles.

I succeeded at school, I succeeded in work, and I succeeded in social status.  I was nothing like my mother’s life.

Not until I was.  Not until I realized that there was just one thing missing for me, and I would wholly embrace the answer to that, and it would gut everything I’d worked for, including part of the spirit that had carried me away from small town nightmares.

I fell madly in love.  He said that I was the smartest, most beautiful woman he’d ever known.  He asked, “What can I do to make your life happier”?  He said, “I promise, I will take care of you”.

He eased the deep thread of emptiness so common in the fabrics of my kind of past. It was really an unraveling, but I’d grown used to pretending that strand of vulnerability didn’t exist anyway. That was a necessary evil to confirm how much more ahead of my mother I was.  So, I ignored the red flags that waved and I said, yes.  Just like my mother did.

He swept me off my feet and back into hell.

It was a little over three years before I was able climb out.  By then, almost all of my relationships with friends and family had deteriorated, along with all the other areas of my life.  The only miracle within the madness was that I didn’t have children with him.  Not that we didn’t try.

I moved from the immediate brutality of that time, but it turned out I wasn’t completely out of those woods yet. I was always a bit of a slow learner for anything that required my heart to assess what was not in my best interests, especially where love was concerned.

I hadn’t learned yet that honest trust for anyone else can only come from honest esteem for self.  I still had to learn what that looked like. I still had to learn that betrayal hides in plain sight for the unwitting, and sometimes it’s disguised as your best friends and your closest confidants.

It would take another turn on that shaky dance floor before I could really see under the masks. This second teacher was far more subtle, but just as oppressive with his demand to control.   That three year dance was a constant and chaotic struggle to change him/them, but it was clear that this one was about accepting that all the changes needed were mine.  I accepted finally that it wasn’t my job to love someone enough to become a better person or to make them be better people.

Time moves every story along, and it became more of my friend this round.  My bright future lay tarnished on the ground, but I was finished with the idea of gleam anyway. The only choice I could face was to go back to the beginning.  A revisit to that place that gives you the so called strengths you depend on to survive, but really are old scars that need to be opened in order to be properly closed.  I was taught that healing me was part of healing the whole of humanity, but it was the only part that I was, or could be, responsible for.

I reworked how I defined success and my revised ideals created the roads to more meaningful ways. I learned to accept that healing is never really over, but the lessons begin to bloom more in joy than the scrapes of sorrow.  I worked my way to a life that is different, quieter, but true; to one that matters.  Just like my mother did.

And every now and then, we sing together the words of an old country song that plays to our fated heartstrings and we smile at the notes that we more than survived.

RL

This story was partially published as a guest post for JT Weaver.net in September 2013. Revised May 15, 2014

 

 

Margaret’s Baby

Sometimes old memories float up in need of
a little light…
A soul’s whisper to let it go.

curtains city skylineI was 14 years old.  My mother and I were living in an apartment on the 14th floor of a basic downtown high-rise.  We were there because that’s where she was when I ran away from the last foster home I’d intended to live in.

I threatened to run away and never be found again if they made me go back to that home.  The Department of Social Services, and my unprepared mother, gave in.

My mother had been struggling with escape from an abusive marriage, alcoholism, and no way to fully support her daughters.  That’s how we ended up in foster care just after Christmas that year.

We were six girls, ages two to twelve years.  I was twelve.  They were my sisters, and because I was the oldest, they were also my beloved babies. There was no doubt that we were a fiercely bonded ‘band of sisters’ having already traversed a very rocky start together.

I was quite used to taking care of them, and the house as required, which it seemed was almost always.  So, the demand to relinquish responsibility to the social workers who came to take us away or to the people who were to foster us was incomprehensible.  It was shocking and infuriating and frustrating.

Many nights I’d lie awake planning our escape from that foster home and formulating the many ways I’d find our mom. I usually ended up crying myself to sleep immersed in the despondency of realizing how powerless I really was.

We were all together in that initial home, except the youngest who was instead taken to live with our father – another story for another time.  I was eventually to move to two other homes within a year and a half. Only one sister was allowed to go with me; they gave me one day to choose between the four faces that pleaded to be taken.  Despite everything that we’d already lived through to that point, it was then that I learned that a soul could feel fractured.

In short time, and with little choice, we adapted and carried on as kids are so able. Then two years later, suddenly we were all being taken to visit with our mom at her own new home. The visit went by as quickly as I’d dreaded. When it was time to say goodbye to her, it felt like the beginning of all the bad goodbyes again. I could not return to that pain; the next weekend I bolted for home, for her, for good.

So there I was, on the 14th floor in a small, sparse apartment, a temporary only child, but finally with my own mom.  Life definitely took another turn in my day-to-day. I spent less time with my friends and more with my mother’s.

She had a friend on the 7th floor.  Phyllis was one of those larger than life characters; a hard-drinking party girl, a queen bee who had great pride in being a full-time ‘player’.  She seemed to take my mother under her wing.  She was a louder than life distraction for a young woman bogged down with desperate problems.

Phyllis held court to an allotment of very proud and loud butch lesbians.  They called themselves the girbols (girl boys, hard g).  One of them was Margaret. She was pretty, a large woman, and very quiet. Though she liked to hang out with the crowd and indulged in the same drink and smoke, she alone remained quiet.

I came home from school one day, at the start of spring break, and went down to the gang. There was a brand new baby girl cuddled up in Margaret’s arms.  I hadn’t even realized that she had been pregnant. The baby was so tiny and delicate, and wrapped in a pink blanket.

Spring Break began on a weekend and as on all weekends, it was time to get the girbol party started. I was immediately designated the girl baby’s guardian. I took baby, and all of her required possessions, up to my apartment.

The ‘weekend’ turned into nearly two weeks, during which I had full custody of baby night and day. It’s awesome, as in really awe-inspiring, how easily you fall in love with a child, even as a young girl, and you immediately wish to be everything it takes to nurture them to perfection.

She needed me for everything and I reveled in that.  At night, I would wrap her next to me and listen to her breath and smell the top of her head until I drifted off in true peace. Every minute with her was another moment of reclaimed love. I was once again protector, friend, sister, mother.  For awhile I was me again.

Spring break was over and I’d already missed two days of school, I had to go back.  That morning, I reluctantly took her down to the 7th floor, gave her back to Margaret and left for school.  When I came home, I dropped off my school things and grabbed one of her blankets to collect her. I sniffed her baby smell all the way to Phyllis’s apartment.

When I walked in, I saw Margaret sitting by the window, staring out with the curtains blowing around her. The girbol group was strangely quiet. I asked for the baby and no one said anything.  I went to Margaret and asked. “Where’s the baby”?  She wouldn’t answer, and then I saw her tears.  I was instantly alarmed.

“Where’s the baby Margaret”?  I was ready to cry, but not sure why.

“They took her”, she said softly.

“Who took her”?

“Social Services.  I phoned them today and they came to take her away”.

I know I asked her why, maybe a few times, but I don’t recall an answer.  I doubt she gave one.

I turned from Margaret and I looked at everyone else.  No one would look back at me; they kept their eyes on the floor or each other.  I turned to Margaret again and watched her silently cry for a while.  I walked to the door and quietly closed it behind me.

It was the last day I saw Margaret, or our baby.  I went to sleep that night holding that baby blanket. I wanted to cry, but I couldn’t.  Somehow, I knew in my heart then, that no matter how much I dreamed, I was never going to get my family, my  ‘band of sisters’, back in the same way again.

And, we didn’t, not ever in the same way again.

RL