312 pictures.

That’s the sum of my son’s life in photos.

I know because I counted every single one, days after he died.

11 years ago today, I looked like this:

It’s okay. You can totally laugh and call me a beached whale. I still twitch when I see that picture. I mean, really, how sexy can one gal get?

Less than 24 hours later came this photo:

Shale didn’t yet have casts on his clubbed feet and I remember being horrified by the tubes and his crooked little feet. I didn’t want to touch him. I was scared he’d break even further. I was stuck in this odd limbo of grief for not having a perfect baby and the horror of not knowing what to do with a broken one.

Then came the big button incident of ’01.

My lovely child couldn’t control his tongue and it kept falling back and blocking off his airway. Any time he was flat on his back or upright he’d choke on it. So the all knowing doctors stitched it to his lower inside lip in the hopes he’d be able to finally get off his stomach.

Three weeks later, he did.

Only to go back flat on his back again.

One lesson I quickly learned in the early moments of Shale’s life is just when you think things can’t get worse, they can.

Oh life and your silly little lessons, mocking my naiveté.

There was a lot of tubes and wires, surgeries and casts, transfusions and general hospital chaos filled panic but eventually it all led to this:

Shale finally came home.

His first birthday found me unprepared. I figured I wouldn’t make a cake since he couldn’t eat it but it didn’t seem right to deprive his sugar loving siblings of cakey-goodness, so I bought donuts as a happy compromise. It became our January 4th tradition while he lived.  Of course, while I remembered to buy donuts I completely spaced on birthday candles.

Oh well, beggars can’t be choosers and all that.

The days blurred by with doctors appointments, hospitalizations and the haziness of life in general.

He grew hair, learned to sit and give high fives.

He grew. Even past the age they told us he wouldn’t.

He learned to walk. He taught us how to live beyond the fringe of normal and see the world with new possibilities. He taught us how to be the people we are today. He loved.

And oh, how he danced.

And then, he didn’t.

It’s an odd thing to celebrate a birthday of a boy who no longer lives. But I suppose it is no odder than loving a child who is simply a memory.

Time slips by and nothing seems to change just as everything is.

My son is still gone. I still love him. Most don’t even know he existed for the years he did.

But today, as the sun shines through the parted clouds and glistens off the snow riddled with footprints, my family will take a moment to recognize how much he gave us and how grateful we are for the moments we had with him.

Happy 11th birthday kid.

On the surface, I look normal. Healthy even. My past, it’s invisible to most. You’d have to look close to see the cracks in my facade and most people don’t bother.

But I can’t escape those cracks. There are reminders, flashing like a neon sign on a dark city street, reminding me I’ll never escape this path I’m on. A single white stretch mark beneath my belly button. A tattoo on my back with a scar running through the center.

The crows’ feet at the corner of my eyes, less from aging gracefully and more from being thrust into a vortex of pain. My nose ring, a reminder of the numbness I carried and a desperate desire to feel anything once more.

Yesterday, a lady asked me how I cope on the rough days.

The day before I received an email asking how I survived.

The week before, a tweet exclaiming surprise and astonishment that I had a deceased child. They didn’t know.

My wounds are no longer on my surface, festering with the rage of raw grief. They’ve scabbed over from time and endurance and the million tears I’ve cried. They’re hiding under the surface of what you see, threatening to rise to again with a sudden memory or a sad song on the radio.

I wear a skin that is too small most days, fitting tightly to leave no room for the pain that follows me around. It is painful to live with a lost child. To hear of your child’s antics. To see another four year old thrive. To watch a five year old blow out their birthday candles. To watch other’s children live. It cuts sharp like a knife through the jello of protection I’ve managed to scab around my heart. I wonder, sincerely, if it will ever not hurt to see everyone else’s children grow up, when my child did not.

Love harder.

Losing Shale was the most violent experience of my life. His death was sudden, swift and cruel. We were shredded in moments we never knew to anticipate, left alone in the carnage of death, our lives ripped violently apart with the quiet passing of a small child.

I haven’t quite figured out how I survived that moment, or how I continue to walk around in various states of zombification. I can’t think of that night, or the days that followed without clutching my chest and having to remind myself to draw breath.

But there are moments, more now than ever before, where the pain is pushed aside, hidden behind the clouds of joy I’ve peppered into my landscape. Like chasing butterflies, I’ve chased joy because it has been the only thing that has kept the monster of grief at bay.

Laughter rings in my ears now, and happiness is no longer a fiction to wonder about. It is real and it coexists with the stark reality that death is final.

Most people don’t see the quiet moments anymore, the ones where grief sneaks up on me and shatters my joy. It doesn’t take much. Shale is everywhere with me, imprinted in me as much as the freckles on my nose.

Small moments of wondering what he’d be like now. He’d be ten. Would he be tall? Would his hair still curl into soft ringlets when it grew out? Would he be able to say Mom? Would he look like his brother Frac? Would he like his brother Jumby? Would he walk?

Those questions torment me, haunting me with their answers held silent, and it burns my soul with a physical pain I would once have told you was impossible. Imaginary. But it is as real as the pain of getting kicked in the groin by a little boy on a playground. This pain exists. And worse, it seems to endure. Nothing stops it.

So I’ve learned to live with it, like a bad limp, or an eye that keeps watering. It is simply part of what makes me Tanis, whether I like it or not. I’m tired of fighting the fact I carry an inescapable pain with me that no one can see. I’m tired of being sad that others no longer grieve for the child that once shined so brightly with the love he shared.

It hurts to see my kids remember their little brother and cobble together their memories of him, hoarding them close in fear they’ll forget the love they once shared with him. It hurts almost as much losing my son all over again.

So yes, I have a son you never knew I lost.

And no, I don’t really know how I cope on the rough days. Mostly, because I don’t cope. There is no real coping in the face of such loss. There is simply existing through the violence of the pain.

My great secret for learning how to survive this unthinkable loss is that I don’t have a secret. I’ve survived and I hope I will continue to, always because it’s a choice I’ve made. To survive this. For myself, for my existing children, for my son who never had the luxury of survival.

But more than survive, I choose to live and to love. Everyday, with great passion and forethought, because I never know if today is the last day I’m going to be able to hold my loved ones.

Death changed me.

It made me love harder.

Which, I guess, is the real secret to how I survive, how I cope.

I love. Even as it hurts to do so.

I hope you will too.

I bought bubbles for Jumby to put inside his Easter basket this year, like I did for you.

He probably won’t be able to see them, but he will giggle when he feels them pop against his cheek, the same way you once did.

When I take him outside this Easter, like I did you, and blow them into the air, I will feel joy again. Your loves floats around us like the bubbles we will blow in your honor.

Happy Easter everyone.

May bubbles of love fill your life too.

They say a picture is worth a thousand words.

I’ve never tested that theory, but inside my home there are pictures waiting to prove that theory. Pictures which sing the haunted notes of Jumby’s history.

Notes which get louder when I near the small safe in the back of my closet. A safe containing a a large envelope. Inside that envelope contains photographic evidence of the evils of mankind. Proof that hell exists and the Devil is, indeed, very real.

That envelope remains sealed, locked away in the darkness, away from the curious prying eyes of my children, but it’s contents aren’t forgotten. They can never be forgotten just as they can never be seen. Boo and I are reminded of their existence with every passing moment of our day every time we look upon our son.

A year ago, Jumby came into our home. With little pomp and ceremony, a boy became our son.

Today my family celebrates the joy of Jumby and the love he has so freely given us. We celebrate the milestones he has reached, the goals he has set, the dreams he harbours all locked away inside his head.

We celebrate the normalcy of his daily life, the tube feedings, the therapies, even the fact that he is currently constipated and on my counter awaits an enema with his name on it.

We celebrate the realities and the challenges having Jumby in our family brings us. It’s not always easy, and as the enema can attest, it certainly isn’t glamourous, but it’s ours.

Today is Jumby’s day.

We love you kid, no matter where you’ve been, what you can do, or who you grow up to be.

We love you Jumby, because no matter what the pictures inside that envelope say, your smile will always say more.

I started this blog to remember how to laugh. To find the joy in my life after the death of my youngest son. For the most part, it worked. I’ve laughed a lot. I’ve met new friends and the boundaries of my life have opened up beyond anything I could ever imagined.

But in focusing on all the positive, funny little things over the last four years, I never fully worked through the heart ache of losing my Shale. I just kept pushing that pain away, telling myself time will take care of the wound. When grief would rear it’s ugly head I’d write a post and then close my computer and myself from actually working through it.

These last few months all that time delayed grief has been wresting on my shoulders like an angry Silver Backed Gorilla, thumping the back of my head and yanking on my hair as though bananas would magically sprout of my ears. It’s been hard to forget.

Bringing home Jumby has been a dream come true and a joy but also a constant reminder of who isn’t here, the invisible brother who lives only in the shadows of our hearts and behind the glass of a dusty picture frame.

It’s been tough. I more often than not find myself struggling with guilt because I can no longer remember Bug’s scent or the sounds of his laughter and I worry he will wonder if I love him less because I have a new son. When I’m not plagued with guilty thoughts over Bug then I’m freaking out wondering if I’m loving Jumby and his siblings enough or if I’m being unfair to them when thoughts of Shale creep in and take the shine off a sunny moment.

Because I’m a little more self aware now than I was immediately after Shalebug’s passing, I recognize I’m struggling. I’ve spent time with a therapist, I’ve dutifully swallowed the little pills guaranteed to balance out my brain and put a smile on my face and I’ve wrestled with my emotions the same way my eldest son wrestles with the boys on the playground.

So I have been taking time off from my writing to get my head on straight. And I’ve also been laying on my couch moaning to the baby Jeebus and every one who will listen about the evils of germ infested children who keep passing one nasty virus to me after another. I can barely see the floor around my couch as it’s scattered with used tissues and my damn dog perches herself on my shoulder so her her tongue can dart out like a frog’s after a fly to lick any tasty morsels of snot before I can even manage to reach for the tissue. It’s been (sarcasm) fun. (/sarcasm)

I just wanted to explain my lack of regular posting here. I feel tremendously shitty about neglecting my blog but at this point it’s all I can do to keep my head above water and breathe. Literally and figuratively.

I promise I’m doing my best to find my funny bone again.

And decongest and stay germ free for a period longer than a nanosecond.

You’re patience is appreciated and to my long time readers, I thank you. To my new readers, um, I am emotionally tortured and one day I’ll write great odes about finding my sanity but maybe in the meantime you should check out the Bloggess. Heh. And to those who abandoned me? Here, I’ve a used tissue I’d like you to have.

Thanks for your patience.