These Haunted Arms

November arrives, and brings with it so much excitement and anticipation.  The years first snowfalls delight children, and adults who feel like children and the promise of Christmas coming soon.  For my family, November is a month of celebration, of birthdays for Avery and Landon, my mom and niece Anna, and for Everett.  Don't forget Everett.  Of course we never could, never would.  But strangely, come November, a new and much higher degree of awareness of Everett washes over me.  November ushers in so much happiness, but it also ushers in the grieving season.  All my Everett senses are heightened.  Suddenly, I can feel him. 

The first snows that stick to the cars and the grass bring flash backs to looking out the window at Sick Kids, it's snowing, and I'm thinking, maybe he'll be home at our local NICU for Christmas.  Those birthday candles Landon picked out for his cake, the ones shaped like Lego bricks, I'm wondering what candles would Everett want on his birthday cake.  On his 6th birthday cake.  Six years have vanished before my eyes.  Time passed so astonishingly fast, how time has distanced me from him, and how miraculous it is that come November, I am right there again at his bedside.  I walk in the doors at work, the dialysis doors that are right next to the pediatrics entry, labor and delivery is straight ahead, the air smells different in this part of the hospital, and something as simple as a breath of that smell, and I'm standing at the payphone just inside these doors, and I'm talking to my dad and I'm bawling about his heart, Everett's heart, and I'm telling him how sick he is.  Or I'm standing by the nursing station while the team from Sick Kids stabilizes Everett for transfer, and Elvis is there and he's inconsolable, he's crying so hard he is breathless, he's terrified and I'm holding him.  It takes only the scent of the hospital linens this time of year, and it's November 2007.

At the time, in the thick of it, Sick Kids felt like an awful place to be.  After Everett passed away I walked away from Sick Kids and I vowed I never wanted to set foot in it again.  I was overcome with anger and grief and I never wanted to be reminded of that place and that battle that defeated my son.  As time went on, those feelings that repelled me faded and in 2011 I found myself at Sick Kids once more, accompanying a friend who worked there.  She left us there in that same lobby as she went to conduct some work business, and I sat in those same tables Elvis and I ate at while we were there with him.  I looked up at his floor, the hallway that led to his wing, I watched people ride up and down the elevators we rode it, I listened to the familiar fountains, I used the same washroom, saw the same murals.  To my eyes, to my ears, to my nose, it was EXACTLY the same.  It could have been November/December 2007.  Everett could have been upstairs waiting for me.  He could have been alive.  I could have had hope.  Everything was exactly as it was then.  And instead of being overcome with the guilt I expected would arrive, I felt unexpectedly content.  Happy almost.  Happy to pretend for that very short time that I was back then, I felt closer to Everett then I had in a very, very long time.  It felt, dare I say it, good.  I went to the gift shop where we bought our Bravery Bead necklaces, our symbols of solidarity and love for Everett, and bought a matching bracelet, and put it on my wrist, and felt something tying now to then.  And I walked out of that building with a hesitancy I didn't expect, the closer I got to the doors, to the parking lot, to the street, the greater the pull to go back got.  I wanted to stay.  I could have stayed all day.  Leaving felt like leaving him, all over again.  Lately I've been thinking I want to go back.  I want to sit in that little food court.  I want to walk down that hallway to the Tim Hortons and the little vending machines that give out miniature Care Bears figurines.   I want to go to that gift shop and buy some piece of jewelry.  Bolder still, I want to ride up those elevators, I want to walk down that hallway, and I want to enter that waiting room just outside his wing.  I want to sit on those couches we waited on endlessly and I want to just feel.  I want to feel whatever emotions come my way.  I want to pretend that Everett is through those double doors, the last room on the left in his hallway, the bed in the back left corner, he had a nurse named Stephanie I believe, and she was Scottish.  He laid in open bed with a warmer above it, he had a flannel sheet folded beneath him with sea turtles on it, his lamb we bought him (and one for Landon too) was in the upper left corner of his bed, by his head at the start, his feet near the end.  I want to pretend I'm crouched down at his bedside, or perched on one of those awkward white metal stools, and hold his hand, and touch is cheeks, and emplore him once more, "please don't go".  I can't be sure if it happened or if I just wanted it to happen, but the day he died, when we were huddled at his bedside making these huge decisions about his life, I held his hand and he looked at me, just one eye opened, but he looked at me.  I hope he really did, I hope that moment was the incredibly meaningful deep connecting moment I've remembered it as.

November arrives and suddenly my memories light up and Everett is suddenly quite alive in my head, so vivid these memories can be that my even my senses feel uncertain of what's real.

I can hear the sounds of his monitors alarming, I can hear his little bleating cry.

I can smell the hospital smells.

I can see him laying there in various stages of his life.

All these senses bring me back to his life.

But my arms, these haunted arms, only remember the weight of his body in death. Heavy from fluid and the excess blankets he was wrapped in, unyeilding, and cold.  These haunted arms, desperate to recall what it felt like when he was placed in my arms wailing and pink, and only for a split second after his birth.  Whisked away and intubated right away, unable to be held for a few days more, then suddenly so sick, on a helicopter ride to Toronto, held only once or twice, we shuttled from our NICU where Landon was to Sick Kids to see Everett, who was then intubated again, unholdable, then operated on.  An open sternum for the last two weeks of his life, unholdable.  On the day he passed away the Dr's worked fast hoping to place him in my arms alive, they were too late.  The longest period of time I ever held my Everett was when he was newly gone.  I held him close, I cradled him, I kissed him, I studied his face, his puffy little face, his hair, where they shaved a spot for a IV, then a sensor left a funny little bald spot. And the weight of him, not really him at all, the weight of what we did to him, that's what my arms remember.

Sunday we'll celebrate Landon and Avery's birthday's, 6 and 8 years old.  Landon will blow out his candles and open his gifts and my heart will celebrate him, my smile will be genuine, because Landon delights and amazes me.  I'm awestruck over that little boy.  None of it will be for show.  The love and appreciation I have for my living children is consuming, it fuels me.  But the grief, the haunted arms, the longing heart, the memories that are so strong and so calling, they're very real too, especially this time of year.  The memories from this time of year, six years ago, of Everett, of his life and of his death, though they may be at times quite macabre, are also quite welcome.

Everett can haunt me any day.

Grieving season is as welcome as Christmas.  It brings him close enough to see, to hear, to smell, to feel.   That alone is a blessing.

(This entry is also posted in my new blog, From Self Destruction to Reconstruction).

The tale of two truths...

It can be perplexing, to try to understand why someone is the way they are.  When we can't make sense of someone else's behavior, when it doesn't mesh with our own beliefs, when it isn't what we think we would if it were us in their situation, we get uncomfortable, and we label that mystifying behavior as unusal, harmful...wrong.  We prickle against what we can't understand, because the unknown is daunting, even in the lives and emotions of other people.

It's not escaped my awareness, that people don't understand me, at least when it comes to the dissolvement of my marriage and my lingering loyalty.  They don't understand how I can hold on to my affection, my devotion, my love, for Elvis in the face of the hurt and the loss.  Looking through their eyes, I know its nonsensical, to them I've been betrayed, hurt, and humiliated, and when they take stock of the emotions they think they would feel, they find anger, resentment and bitterness.  "Where is her rage?!" they ask themselves.  Maybe the even wonder "where is her dignity?", or pride, or sense of self preservation.  They hear about my loss, they see my emotion, they know the details and they see my reaction and they think one of two things about me, I'm either lying about how I feel, putting on a mask to protect myself from feeling the depth of my pain, or I'm a damn fool.   I am not a fool, and I'm not hiding behind a strong face.

People roll their eyes at me when I tell them that I still like, no love, my husband, even though our marriage is over.  They are exasperated.  They pity me and they're angry at me and they think to them selves that if I'm stupid enough to put myself through the trouble of trying to maintain a relationship with him, then I deserve the pain I get.  I can see it in their eyes, they don't understand me, and like that, they've dropped me into a category of people they don't know how to deal with, this category reads "Handle with care: strange, dangerous, crazy people inside."

People don't know how to deal with those they don't understand.

Here is why you don't understand me, it comes down to a tale of two truths.

"Love is not enough", and "love is all there is."

These two truths exist, simultaneously, in one moment, in one situation.

My marriage, it was not acceptionally bad, it was not terribly unique, neither are our lives.  Our troubles were not huge, our issues not shocking.  We were two people who lost their balance, and lets be honest, living a happy life with another person is a precious balancing act, balancing the needs and emotions of two people while standing on a tight rope while catching every curve ball life throws our way, its no wonder so many fall.  But, because we're human, because we're self protecting at the core of us, because we keep score, because we're fearful, even with emense love, sometimes you can't put back to right what has been wronged.  Love is not enough to repair a shattered trust.

But, then again, when I allow myself to wax philosophical, when I'm pondering what really matters in life, and I strip away the "fluff", at the core of it all, love is all there really is, it's the only thing that matters.  At the end of my days I'm sure to recount the love I felt from others, and the ones I gave my love to.  And on the grand scheme of my life I know that my hurts will seem scattered and few among the years and the love will be the common thread that sews all the days together.

People hurt people.  We do it often.  We start young.

Kids throw stones and call each other names.

Teenagers reject each other.

Girlfriends dump boyfriends and vice versa.

We lie to each other.

We take from each other.

We break each others things.

We break each others hearts.

We all do it.

And you see, that is my point.  People want me to feel outraged and wronged and they want me to be indignant.  They want me to hold Elvis accountable for his supposid crimes against me, they want me to abandon him, they want me to want him to suffer.  They think it would be rewarding, vindicating even, to see him experience consequences to his actions.  That would lessen my pain, no?

No.

Call me crazy (I know some have), but I'm not that shocked by the circumstances of our unraveling.  And though I certainly felt hurt, and betrayal, and grief, I'm not terribly mad at Elvis, and I absolutely don't wish him suffering, or pain, or consequences so great that they "teach him".  And I wonder sometimes if what people think is lunacy in me, is really just insight.  I think I've always been pretty insightful.  And you see, Elvis is NOT the villan in my life story.  He's not the tragic ending in this chapter of my life.  He's not a transient character that is being written out of my plot.  And his instance, this hiccup, in his life, and in mine, this shared sadness we've experienced that ultimately caused us to fall off our tightrope, it doesn't define him.  It's not who he is.  It comes down to choices, he made some, I made some, I can't even call them bad, they're just choices, and often times the choices we make are like those "choose your own adventure" books we read as kids.  I made some, he made some, neither of us necessarily knew what the outcomes of those choices would be.  We didn't know in the moment if they would bring us together, or lead us off track.  We did the best with what we could and we crossed our fingers and hoped for the best.  No body WANTS their life to get off kilter.

Sad truth is, our marriage skidded off road, it didn't make it.

However, I'm still alive.  So is Elvis.  So are our children.

The untying of our "knot" was not the deletion of our history.

Each and every minute together remains on permanent record in our history,

Each fight is stored right alongside each loving kiss, each celebration, each birth.  Every single sadness resides in our memories beside every triumph, every passionate moment, every joy.

We didn't cease to exist to each other because some fateful choices made it impossible to live together.

We are not strangers.  We're not enemies.  And though love was not enough to build us back up, love is all there really is when you strip it all down the bare bones.  There isn't really any other choice for me, but to hold him in my heart and give him my love.  He DOES deserve it.  He is a very special and important person, and if you think I'm wrong then you are very short sighted.  He is not any different then anyone else, he's no worse then any of us.  He's got a heart and a soul and a past that weighs on his present.  He wants to live a good life, he wants to be a good man, and like you and me, he doesn't always know how.  He doesn't have all the answers.  Sometimes he dissapoints people, sometimes he dissapoints himself.  Just like me,  just like you.

But I've known him for a little over 10 years.  God, who is the author of all our stories, has written him into my life, he is of great importance, his signifigance is not to be overlooked.  He has always been and will always be a part of my destiny, whether he is to be my husband or not, our love story is a special one.  You don't undertsand it, I get it, but that doesn't mean I'm wrong.

Two truths, seemingly contradictory, can exist in one circumstance.

Love is not enough.  This is true, love cannot work miracles.

But then again, maybe it can.

Because love is all there is, it's all that matters to us when our days are done.

Love gives courage.

Love makes us selfless.

Love promts understanding, and forgiveness.

Love gives us insight, often mistaken for blindness.

Love is all there is at the core of a happy life.  Love means that your life can be hard, and sad and maybe even tragic, and you can still find the good in it.

So, don't ask me to turn my back on him.  I can't do it, and I wouldn't if I could.

You may cringe when I say this, it may offend your sensibilities, I may lose your respect, but, truth is, I need him still, and I want him in my life, and I love him, quite dearly.  He's my first love, my childrens father, my partner in crime for the past 10 years of my life, and my friend.  Why should I have to live without him, just because somethings went awry and our circumstances changed.

I'm pretty sick of the "be strong", "suck it up", "get tough" attitudes.  I'm tired of being told to put up walls to protect myself, I'm tired of being told told to put away my emotions and face my new life like a soldier.  Why are we so afraid of vulnerability? Why can't we let ourselves just experience life as it comes, and why do we view acceptance and vulnerability in others as weakness?

I've tried it both ways, and I've never felt more real, more human, or more peaceful then when I'm vulnerable, maleable and open to what life will bring, trusting that all my chapters, past, present and future, are writing a beautiful, breathtaking and meaningful story, and all I have to do is live it.

Understand me now?

Katie

In uncharted territory...

Anyone who knows me, especially in the last five years, knows I'm not a stranger to trials, or pain.  So, it's not that I'm unfamiliar with hardship, so its not that I find myself up to my eyeballs in difficult emotions and struggles that has me feeling so unsettled, its that I don't seem to know how to get back on track.

I'm lost.

I'm well and truly lost this time.

My son died, and I found my way back on track.

My marriage hit a snag, I got my groove back.

Two miscarriages, I stumbled, I got back up.

But now, my marriage is over.  And suddenly its like I can't see.

And its not that I don't know what to do without him.  It's not that I don't want to break up, it's not that I want to work things out.  We're well beyond that and I know that this is the best thing for us all.  But I've been with him for 10 years, and so much of my life has been lived along side someone else.

I never lived alone.  I was never an adult and on my own really.  I met Elvis when I was 21 years old and threw myself into him.  I went from my parents house to our house, and never looked back.  I put all my eggs in one basket I guess you could say.

I don't regret one single day in the past 10 years.   They were priceless.  And we have four fantastic children who make every single heartache completely worthwhile.

So why am I so disabled by this change?  Why can't I get my bearings again.  Why do I feel so absolutely insane, indecicive, manic, panicked, lonely, fearful, and confused? 

I can't get back up, I can't choose a direction, I can't move on...

Because I don't know myself.

I don't know who I am.

My home isn't MY home.

My vehicle isn't MY vehicle.

My life is a tangled mess of what was "Ours".

"We" are everywhere. 

I'm a Mrs. on paper, but not in reality.

I belong to the Peca family in name, but not really.

Who AM I?! 

I think I used to be an artist, but not anymore.

I think I'd like to be a photographer, but I'm not sure.

Maybe an author, but I can't write a cohesive sentance let alone the novel I dream of.

Am I soft and demure like I sometimes feel, or am I edgy and strong like my increasing amount of tattoos would suggest.

Do I want long flowing curls or do I want to chop all my hair off again.

Do I want another relationship or am I better off alone.

Afterall, I don't know me, heck, I don't think I even really like me, how can I expect anyone else to?

My marriage is over.  And I've been rendered absolutley senseless.

Its like I'm on the ground starting up at the sky with the wind knocked out of me, and every time I go to get up I flinch at the pain, the fear of the unknown, at the daunting task of simply getting up and finding out what life holds for me now, without a marriage to define me and a partner to accompany me.  Its overwhelming.  So I've just stayed down.

Thing is, I want to get back up, the fear is diminshing and curiosity is creeping in.  What does life hold?  What's it look like now, after the tornado of change has whipped through, what's the landscape look like for me now?

I just don't know how to embrace MY new life, when I don't know how to just be me, because I don't know me.

I guess I need to start making my home MINE. 

And learning more about what I like, what I want, what I need.

And go from there.

Katie

It isn't natural....

It isn't a natural thing, to birth a child, then live his life without him.

It isn't normal to pack away your hopes and dreams for your child, along with this few, but precious belongings, because his life was far too short, and painfully lived.

It isn't okay that he died.

And it isn't okay that a lot of other things unraveled in the aftermath.  

But it it exactly what it is. 

And it's been over four years now since I delivered Everett and Landon, and only weeks later said goodbye to Everett and brough Landon home.  But that event was just the begining, it was the stone thrown in the pond, the ripples continue on and on.  Losing Everett set us on a path we could not have ever imagined, not in our wildest dreams, every single aspect of our lives changed with is life and with his death.  And while it's been painful at times, and confusing, I know that it's all been for a purpose, and dare I say, it's been for our good.

Now, there are people on the outside of this experience, maybe they watched it happen, maybe they felt one or two of the ripples in their own pond, but it didn't happen to them and they don't really understand how it is.  How could they? It happened to me and most days I don't understand one single thing thats happening in my life.  But anyway, these people, they like to think they know how grief should look like and what we should be doing with our lives and our broken hearts in the aftermath of losing an incredibly beloved child.  They don't have a clue. 

They see the external aspects of our lives now.  They see us carrying on.  We had to carry on, what choice was there?  We had to raise our children and live our lives and I think given what we went through, we took those broken pieces and did our best with them, and what we made wasn't half bad.  But what they don't see is the internal damage.  They don't see the cracks and fractures that run to the core of us.  They go so deep.  And though we rebuilt ourselves to some resemblance of our former selves, the selves that never grieved over a lost son, we're not the same at all.  Nothing is as it was.  No wonder we couldn't maintain what we used to be.

Try as we might, life set us on a dramatic and unexpected course, and being that we're just human, we didn't always know what to do with ourselves or each other.  We did what we thought was best, and we had the very best intentions, but it's hard you know, to mend a broken heart of your own, while trying to tend to your children and also worry about the needs and demands of another.  It's not that you don't want to try, it's that you don't realize you're not already meeting everyone's needs.  I know there are people out there who stand in judgement of us, for letting our marriage fall apart.  We didn't do it on purpose, neither of us willfully neglected the other.  There was no spite involved.  What you have witnessed, you people standing on the outside looking in, is two people who tried very hard, under the weight of grief and sadness and obligation and strain, to put back together and maintain what used to be, not knowing that what used to be was gone for good and we needed to be building something completely new.  But hindsight is 20/20, and we can't go back and change the past.  And here were are now, 4 years and 4 months later, and we're changed beyond recognition.  Our lives are full, our lives are blessed, our lives our complicated, so much more then you can tell by just looking at us.  And we're still doing our very best to make the most of the hand we were dealt.

It' isn't easy you know.  It isn't natural, to go through what we went through.  To hold you child after he took his last breath.  To take his only outfit to the funeral home for him to be buried in.   To lay his felty white casket in the groud.  There isn't anything quite like this kind of heart break.  Saying goodbye to a baby you never got to parent and love the way you planned, it causes a sort of damage to your heart that you just can't describe or explain.  Its more like a crush injury then a fracture, so many tiny pieces, not a hope of ever really returning it to proper function.  So, it doesn't come as any surprise to me, with heart ache like this, that we lost our focus on our marriage, it's not that we didn't care, it's that we couldn't care.  Our own pain overshadowed everything else, it was all we could do to try to be normal and try to heal, and as we healed and the pain lessened, we had learned a new normal that didn't adequately consider the needs of the other, but it was normal and again, we had good intentions, we just didn't know we were so badly off course. 

Neither of us meant it to happen, it's just another tragedy in our lives that we'll learn from and we'll rebuild again.  Don't hold it against us, and don't think you can understand fully, don't judge.  We're still hurting, from old and new afflictions, be gentle with us.  We did the best that we could.

Some things don't work out like they should (Thanks Joe Purdy for the perfect words).

Katie

Once upon a time....

Once upon a time, I never knew what it meant to grieve.

Once upon a time I had never lost a thing that was of real value to me.

Once upon a time I was blissfully and ignorantly happy, unaware of all the loss and grief my future held.

But that was then.

Life has brought me numerous blessings, it would be ungrateful not to awknowledge how full and amazing my life truly is.  But, it would be a lie to deny that the world has also brought me blow after blow, and loss after loss, it would be a lie to say I'm not feeling grief and agony along with that joy and gratitude.

Tomorrow is the four year anniversary of Everett's last day on earth.  It marks four years since experienced a truly unanswered prayer, four years since we said goodbye and walked out of Sick Kids with empty arms and shattered hearts.

Its been a rough four years, I can't deny it.  Its been a time filled with sadness and guilt and grief and longing and pain, all mixed it with joy and love and healing and blessings of course.  It's been a rollercoaster of emotions.  And I've grieved Everett at will over these four years, whenver the need struck me, I'd cry, blog, and grieve as the pain came, so as to not hold anything in, so as to not let it fester and become more grief then I could process.  I miss him with every single beat of my heart, and I am constantly aware of his absence in my life, and I know he would be just amazing, like his brother and sisters, but that's not my reality, it's not his either.

All I can think to do now, with this grief and with this pain, and with these memories, is to share it with the world, and to do good things in honor of Everett, so his brief but very special life continues to have meaning, and he can continue to touch hearts and make an impact on others.

He was so incredibly special.  So tiny and delicate, so wonderfully made.

He was precious and loved and an absolute amazement, for such a small and unhealthy little boy, he fought so very hard for his time with us.  He fought and held on and gave us 20 days of faith building love and memories.  I wanted more, but those 20 days were an incredible gift, I know it could have been much, much less.

I can't predict what tomorrow will bring, if it will hold tears or peace for me, I expect it will be a combination of the two, but I'm hoping to be able to remember with a calmness of heart and with gratitude, because Everett changed me in ways I never knew possible.

Indeed life is hard, but its also very beautiful.  Some of the most amazing blessings in life are brief, gone before you know it, but that makes them no less miraculous, and no less life altering.  He's in my heart and on my mind always, and I think I can credit much of my strength in the healing /grieving process to him, who is my inspiration, for there was never a stronger or more inspiring boy.

Love you always Everett.  Always.  -  XO, Mama

Katie

Futile

Every "I wish"

Every "I'm so sorry"

Every "If I could only go back"

They're futile.  They're pointless.  They only serve to punish myself.

I wish I could hold him again, I wish I could change it all, I wish we had done it differently, I wish he never died.

I'm so sorry, Everett, I'm so sorry we messed up, I'm so sorry you paid for it.  I'm so sorry we failed you, I'm so sorry you're not here, I'm so sorry I couldn't fix it.

If I could only go back, I'd do it all differently, if I could only go back I'd tell them to take cautious, slower approach, I'd tell them to give you time.  If I could only go back, I'd hold you more and kiss you more and tell you more how much you mean to us.  If I could only go back, maybe I could save you.

Wishes don't come true.

I'm sorry doesn't change a thing.

And I can't go back.

And where does that leave me? Grieving and in pain, with nothing to do but cry out in pain, and in prayer, and let God do what he's been doing since we first lost Everett, hold me up. 

God please, hold me up, when I'm swallowed up in the futility of it all, when my grief is consuming me, hold me up.

Katie

A grieving season...

Leaves are falling, there's a chill in the air, and fall is in full swing.

Halloween is coming, and soon we'll be counting down to Christmas.  This has always been one of my favorite times of year, where fall ushers in a season of celebration and joy, from Thanksgiving through to Christmas, the weeks are packed with fun.  But, nearly four years ago, a change ocurred, which dramatically altered the season.

Now its a thanksgiving season.

It's a trick-or-treating season.

It's a kids birthday party season.

and it's a grieving season.

It was November 17th 2007 when I delivered my much anticipated twin baby boys, this marked the seasons start.  It ends on December 11th 2011, the day we burried one of them.  Each and every year, our hearts react the to coming of the season, where similar events and situations spark memories and emotions and bring them to the surface in an incredibly vivid and tender, even painful way.  This is not meant to imply that we don't grieve all year round, but this grieving season is when it all hits home.

It goes like this.

November 17th, we celebrate the birth of our amazing twin sons, we remember the awe and the joy and their delictate perfection.

November 29th, this is the anniversary of the day Everett had his first open heart surgery.

December 5th, the anniversary of his second open heart surgery.

December 7th, we remember the day our world shattered and fell to the ground, the day Everett died.

December 11th, we remember his funeral, the day we held him in our arms last, the very last day our eyes could look upon him, and for many of our family and friends, the only day their eyes would ever look up on him.

And every day since has been a day of remembering, falling apart, building up, looking for comfort, looking for a reason, grieving, and starting over. 

Sitting here, nearly four years after the birth of my boys, I can tell you that, at this minute, I'm okay.  I've been rebuilt and healed enough at this point that most days are okay.  I miss Everett always, there's a tiny place in my heart that calls out for him always, and there are tiny stings of grief each day.  But if you saw me, you'd think I'm pretty well healed.  But grief is a funny creature, and it comes and goes, like the tide ebbs and flows, like the seasons, it always comes back around again.  November is almost upon us and I'm already trying to mentally prepare myself to handle being simultaneously happy and bereft.  Because I'll celebrate the birth of three of my children this month, and I'll also be welcoming a new baby niece, and I'll be mourning Everett, and recalling the details of his birth and his death at the same time.

I'll light birthday candles for Landon and watch him blow them out, and I'll be grieving all the birthdays Everett will never have.

I'll wrap up Avery and Landon's birthday gifts and cry over the fact that I'll never get to pick out that something special I just knew Everett would love.

I'll watch others celebreate my living kids and my heart will hurt because I'll look into their eyes and wont see a hint of sadness or grief there, and I'll know they aren't thinking of Everett at all.  To them, life without him, it's normal, and I'll grieve harder knowing I'm doing it mostly alone.  I know they loved him, I know they wanted him to live, but they don't feel it like we do, they don't get it, nor should they.

While I'm waiting for the first snow to fall and awaken that child like wonder in me, I'm waiting for the first pangs of sadness to arrive and awaken the memories that sit just beneath the surface.  I'm waiting to feel it again, to really feel those emotions once more,  and in them, feel closer then ever to Everett.

My tears bring me closer.

My pain brings me closer.

My breaking heart brings me closer.

So close to how I felt back then, when it was happening, so close I can almost see him, almost feel him.

And that is the joy in the grieving season.

Katie

Dear Everett...

Dear Everett,

Tomorrow is a dedicated day of remembering for grieving parents everywhere.  Tomorrow is a dedicated day to awknowledgement, for how many parents out there have a child, or children in heaven, but you should know, I remember you every single day.  In fact, I remember you every single second of every single day.  You're on my mind constantly.  Your face flashes through my mind non stop.  You face stares back at me every single time I look at your brother.  My heart beats your name, Everett-Everett-Everett-Everett.  Your pictures are on the wall, you hands and feet are tattooed near mine.  I take you with me EVERYWHERE, I speak your name and tell your story at every opportunity I get.

I don't need a dedicated day to remember and awknowledge you, but on the eve of a very significant day for so many families, I find myself even more eager to share your name, your picture, your memory, your story, with the world.  I want them to know you, to see you, to hear you, and to understand that you are still so much a part of our lives, and how the loss still echoes through us.  We're still grieving you, I know we always will, and though outwardly we seem to be living our lives and doing well, there are still so many moments, so many silent moments of awknowledgment between your dad and me, or your aunt Courtney and me, or your Gramma and me, where we don't need to say a thing, but we know our hearts are still aching, still breaking for you.

You should know that Landon knows you.  He may not ever remember being near you, but something inside of him KNOWS you.  That bond, that brotherly bond, that twin bond, it wasn't broken with your death.  His heart beats your name too, you are significant to him, even though he doesn't know why just yet.  He talks about you now, and it's an indescribable pain, and joy to hear your name spoken in his young and innocent voice.  He's grappling with the concept of heaven too, he doesn't get it all, someday he will, but I think I like it best this way, because he's not sad at all, he doesn't know that there's sadness attached to you, and I think that's good, he just knows you're his brother.

Avery gets it, and sometimes she's sad about you, but mostly she just remembers you, and includes you EVERY time she tells people who's in her family.  She's a very smart girl, she knows too much for her age, and she sounds so worldly and mature whens he explains to someone that she has a brother in heaven.  She loves you and misses you, but heaven scares her, because she understands that you can't come back from heaven.  I feel bad, because she's aware of death and it scares her.  That's not your fault, it's mine, I fell apart too many times in front of her, she knows there's pain attached to loss.

I'm sure you know of Stella, maybe she met you in heaven prior to her departure to earth.  I like to believe that.  I like to think we all start there, then return in the end, I like to imagine you two knew each other before she joined us here, and no one will ever disprove it for me, so I'll hold on to that thought because it comforts me some. 

I still struggle so much, daily, the aftermath of losing you is chaotic.  Tonight I was fine, and then I started looking through your pictures on the computer, and in a random folder I found a misplaced video, one I hadn't seen in a while, and I did the foolish thing, and I played it, and within seconds grief consumed me, like a vaccuum, I was swallowed up in pain and tears.  Irrationaly I fought against the reality of you being gone, and pleaded for you to be returned to me, my thoughts demanded that the injustice of your death be reversed, and I knew it was ridiculous to think such things, but it can't be helped.  I watched you breathe on that video, I watched your little stomach heave as you labored for each breath.  I watched your eyes open ever so slightly as I spoke to you.  I saw you live again.  And it was agony, because I WANT YOU.  I want you in my arms, I want to hold you and kiss you and stroke your soft skin and hair, I want to hear you cry, I want to mother you, I want to do all the things that your death robbed from us both.  I want to change your diapers and dress you and nurse you and comfort you and nap with you on the couch, and I never will.  This stings in a way I won't ever be able to describe. 

You should know that we miss you and love you and that we wish that things had gone differently every single moment of the day.  You should know we tell the world about you and that we love you every day along with your brother and your sister.  You should know you made us better people.  You should know that we're doing good things with your memory and with our grief.  You should know that I tattooed your hand by my hand and your feet by my feet, but God tattooed you on my heart, and you and I are never apart.  I don't know what I believe about your experience in heaven, I'm not sure if you can see us or not, I'm not sure if you think about us or not, I suspect the glory of heaven is more then a little distracting, but I pray with my whole heart that you feel me up there, that you can feel my love for you always, and that we are not truly seperated at all, but that our love is a bond that remains unchanged even though we are not together.

I miss you so much, and as silly as it sounds, I wish you could write back.

I'm confidant though, that you're in good company there, in heaven, because sadly my pain mirrors the pain of so many other moms and dads, and you likely have many other baby companions up there with you. 

I love you more then words can tell,
I thought you should know

Mama

Discussions of grief can arise unexpectedly

Yesterday we took our children to see The Lion King in 3D at our local theatre.  They were excited and so was I, because I loved that move when it first came out and I was eager to watch it again with fresh eyes, and to see my kids enjoy it for the very first time.  We all had a great time and rode home in the car talking about our favorite parts and our favorite characters, it was a really great family outing.

Later in the day though I was standing at the kitchen counter and Avery came up to me, a little more subdued, and asked some more serious questions.

"What happened to Mufasa, Simba's dad?"

He fell I told her, and died.

"Ya, and went to heaven too, and then talked to Simba in the clouds, and lived in Simba forever"

That's right I told her, nice observation.  One of the lines of the movie, was "he lives in you," when explaining to Simba that his father will never truly leave him, because his strength and courgage and love live on in him. 

Avery continued, "Everett lives in me, because I remember him too, but he's not in the clouds".

Silence.

You're right, I told her, he lives in all of us, because we are all so full of love for him.  I went on to point out that perhaps we might see him in the clouds, or the sky, we've never really looked.  Satisfied, she went on her way, but she left me standing there amazed at how often she ponders Heaven, and Everett, and God, and the logistics of it all.  She gives in genuine thought, she mulls it over and asks such insightful questions, she really does want to figure it all out.

Since she clearly thinks about what happens to us after we die, and she clearly wonders about the capabilities we have once in Heaven, to interact with our loved ones on earth, I may need to share this quote with her, it may just "click" with her bright little mind.

“Perhaps they are not stars, but rather openings in heaven where the love of our lost ones pours through and shines down upon us to let us know they are happy.”

 

Katie

 

Going back...

The night Everett died, we walked out of Sick Kids (The Hospital for Sick Children), with empty arms and shattered hearts. We were broken people, and in our broken state, we felt overwhelmed with anger and pain and grief, and needed something, someone, or someplace to put all those feelings on. We took our anger and we put it on God, who we thought should have saved him, should have cured him, but didn't. We took our anger and our grief and built walls with it, trying to block out the rest of the world, who seemed to carry on normally when our world had fallen to pieces. We took our love and we put it on our surviving children, who were like salve to a burn, they soothed and healed and took away some of the sting. And we took the unnamed negative feelings, the negative associations, the memories of what Everett endured in his time on earth, and we put them on Sick Kids. Though they did so much for us, and for him, and though they treated him so amazingly well and we were so grateful for how hard they tried to save him, we came to associate them with death, with pain, with loss and with the moment we had to leave Everett behind and go home without him.

For years, I lived in fear of having to return to Sick Kids, for any reason. Their commercials on TV made my heart race, and seeing pictures of the hospital, even happy pictures, made me panic. I developed a full aversion to the place my son died, even though I had fundraised for them and believed in their work and their staff, to me, it was the place my baby died, and I couldn't bring myself to reconcile to it.

The other day I made a trip to Toronto with a friend, for a day of fun with her and my new baby daughter. Plans changed unexpectedly when my friend, who works at Sick Kids, had to made a stop in to work, and I panicked at the prospect of having to go with her, even for a short while. I panicked imagining us driving on the streets near the hospital, I imagined the familiar scenery and my heart beat faster. I imagined the parking garage, the elevators, the cafeteria, the murals on the walls, and I cried at the very thought of it. My friend and I decided that to avoid any discomfort for me, I would wait at a nearby coffee shop for her, but as we drove closer to Sick Kids, I found I wasn't panicking, my heart wasn't racing, and I made the huge decision, to go in with her. I made it through the parking garage, through the elevators, through the hallways, through the cafeteria, and I was shocked at what I felt.

Not pain.

Not sadness.

Not panic.

Not grief.

More like relief. More like a pleasant familiarity. Something near to comfort. Some much like peace. How incredibly strange.

I sat in the cafe, just like I had years before, it was exactly as it was back then. I watched the people come and go, Dr's, nurses, patients, parents, volunteers, I watched the elevators go up and down, and I stared up at the floor that Everett was on. I stared up at the spot that we had stood at and stared down from so many times during Everett's stay at Sick Kids. I held Stella and looked around wide eyed, and it was all so much the same, but I felt like I was seeing it all for the very first time. My eyes never welled with tears, and my heart never raced, my breathing never quickened, and sadness never overcame me.

And I felt like some divine plan was falling into place before my eyes, and that I was supposed to come back to this place, at this time, with my baby girl in my arms, to teach me something about healing, and to help me see our experience here at Sick Kids with new eyes.

For more then three years I dreaded ever setting foot in Sick Kids again, because it was the place where Everett died.

Now I saw it as the place where Everett last LIVED!

I used to see it as the place we lost our faith.

Now I see it as the place God used to really lay the ground work to build on it.

I had been thinking of Sick Kids as the site of the event that sent our lives spiraling out of control, and sitting there again, years later, I could see that God used it to set us upon a new course, perhaps a painful one at times, but one that would ultimately teach us so much about love and faith and grace and the importance of cherishing life.

Driving to Toronto with my friend, I wrongly assumed that it would be so difficult to set foot inside that building, but sitting there alone with my baby, surrounded in familiar sights and sounds, and memories, I realized that it would be so much harder to leave it. The pain would come from walking out the doors again, not in. Because there in the cafeteria of Sick Kids, I felt closer to Everett then I ever had in the past three and some years. I felt near to him, and more peaceful and content in his memory then I could have ever imagined. Leaving felt like walking away from him again, but this time it didn't make me fall to pieces, and it did not bring me tears. And this time I did not walk out hoping to never go back again, but rather looking forward to a time when I could go back, and feel that closeness once again.

When Everett was alive and being treated there, I bought myself a necklace in the gift shop, a Bravery Beads necklace with a bright red glass heart pendant. And on my return trip there this week, I went back to the gift shop and bought myself the matching bracelet, it only seemed fitting that I not walk out empty handed, and I walk out with another piece of "bravery" jewelry, to reward myself for taking the monumental step I took, and facing a fear I had been holding onto for too long.


So here's to doing things I never imagined I could do.

Here's to feeling things I never imagined I could feel.

And here is to Everett, who continues to change my heart and my life, each and every day!

Katie

I'm thinking of you....

I'm thinking of you today Everett. I do every day, but today, my thoughts refuse to leave you.

I remembered something painful, and I can't get it from my mind. I can see it in my head when I close my eyes, and it hurts as badly as it did when it first happened.

I pictured handing you over to the nurse at Sick Kids, when the time had finally come to leave, and through tears and sobbing, I uttered the words "Bye Everett", I could barely get them out. I can see myself that day, I can see the agony, and I can hear the grief in my voice, it's like I'm watching someone else. And I still just can't believe that was you and me.

I'm so sorry you had to go, and if I made your departure harder by holding on too tight, I am so sorry for that. I remember I whispered in your ear and begged you not to leave me, as if you ever had a choice. I'm sorry if understood that your leaving would hurt me so badly, I'm sorry if you had awareness that you would leave a hole behind. I hope you left with comfort, and assurance from God that he would take care of us left behind.

Oh God how I miss you, today and always. My arms still long for you, and your memory, your picture, your name, they all still bring me to tears, though that's not a bad thing, those tears bring me closer to you I think.

God knows how losing you has changed and shaped my heart and life, God knows how badly I still grieve, but you should know I'm striving to take that pain and use it to lessen the pain of others, in some small way. You should know that though I hurt, we are all the better because of you. You should know I pour myself into grieving you, just to feel such intense emotion, such intense love, it feels like we're together while the tears are streaming down. It hurts, but that's the point.

I'm thinking of you Everett, each and every moment of each and every day, and I promise I always will.

I love you so much more then I have the words to tell, and I pray I can feel you near when I need it the most.

Love your Mama, always

In the name of love....

How do you parent a child you never get to see?

How do you show your love for a child you never get to hold? Never get to kiss? Never get to tuck in at night?

How do you pour out your heart and your gratitude for a child God gave then took away?

These are questions that plague me, and all parent who have lost a child I suspect.

How can I keep Everett a part of my daily life? How can I love him like I love his sisters and brother? How can I continue to parent him? How can I still be his mother and help make the best of his life?

The answer? It's complicated.

I got his name and his footprints tattooed on my ankle. His handprint is tattooed on my wrist.

His picture hangs on the wall in the livingroom, there are tiny memorials to him sprinkled throughout the house.

He has a baby book.

I made him a Shutterfly photobook just I like I did for the other kids.

We made him a memorial garden in our backyard.

We planted a tree in his honor.

I think of him every hour of every day.

But it still doesn't feel right.

I can't take him to school with his brother.

I dont' get to kiss him goodnight.

I don't know how it feels to rock him to sleep.

I've never put a bandaid on his boo-boos

I've never seen his name on a birthday cake.

I've never watched him unwrap a Christmas present I just knew he would love.

I've never read him a bedtime story.

I don't get to be his mother in the way I want to, physically, tangibly.

There aren't too many ways I get to show the world my son, the one who died but I still love dearly. But I've found a way that feels good, as good as grieving can feel, and I've decided the best way I can show the world my love for Everett, and make the best of his life, is to fundraise in his memory.

It's awkward though, to implore people, the ones you know and the ones they don't, to support my cause, which doesn't mean the same to them as it does to me. It feels strange to ask for money to honor him, and I worry that I just can't communicate properly to them the how's and why's of our efforts.

But I can't NOT ask you to support me in this. I can't NOT tell you how important your support is. I can't NOT want you to attend, because I love Everett, and this is important to us. It's one very small way we can show him, you, God, and ourselves, that we have figured out how to cope with losing our baby, that we know a good way to take that pain and make it beneficial in some way.

I'm motivated by my grief, to make some good from it. I'm eager to take the scenario that broke my heart and use it to touch others. I want him to break your heart, I want you to feel a pang of something for him and for us, and then I want you to take that little something you feel and help us do something with it.

The NICU is full of babies. Some will have short stays and go home healthy. Some will have longer more complicated stayes. Some will never go home.

Then there are their parents. Mother's, newly post partum, who have found themselves parked in the NICU beside an isolette instead of resting in their hospital rooms having guests fuss over their new baby. Mothers who are pumping breastmilk every 2 hours and bringing it to the NICU so it can be given to their baby via naso-gastric feedings, rather then nursing in that glider rocker in their nursery at home. There are mothers and fathers sleeping on cots and pull out chairs in waiting rooms and at bedsides, while they wait to hear how their child did in surgery. There are parents who finally leave the hospital, babyless and broken hearted, like we did.

And I can help. In some small way, we can help them.

Our donation, no matter how small, can do good. Last year we had a charity Stella & Dot trunk show, just like the one we're doing this year, and we raised appx. $800 for the NICU. We took that money and we had two beautiful custom rocking chairs for them. And at this very moment, some new mother is being handed her baby for it's first feeding at the breast, some dad may be getting his very first cuddle with his baby, maybe their sleeping in one of our chairs at night while they hold their bedside vigil.

Our chairs helped. Our intentions helped. Our loss has helped, and therefore has become more then just a painful experience to us, but something more. We can see it now as part of a grander plan, we can see now that we are, and Everett was, part of a complicated weaving of lives knit together. We can't see how it all fits together, but we know it does.

On June 18th we're fundraising again. Same format, because it was so successful last year. But I'm afraid. I'm worried we won't be successful again. I'm worried that people aren't being touched by Everett the way they were, I'm worried his memory, and his impact are fading out. I'm worried that I'm not doing my job as his mother and honoring him and his life the way I should. Because if people aren't moved and inspired by him, I am not doing my job right.

I'm praying God leads hearts to support us. I'm praying my backyard will be full of supporters on June 18th, and I'm praying we'll be able to help in some small way, parents and babies in the NICU, by giving a donation in Everett's honor.

It's what I have to do, in the name of love.



Katie

What is there to do now..............

But quote Joe Purdy, and his sentiment "hard times, they last too long"

In fact it would seem at times, they are never ending, or that at the very least, they never completely dissapear.

Hard times are still marching on.

Sometimes we forget they're there, but they rest beneath the surface of our temporary peace and serenity, always bound to resurface. Always.

I'd like to tell you friends that in time grief itself passes away, but it simply is not true. Grief is invincible, it never dies, it can't be killed. The very best you can hope for is that you can endure your life with grief riding on your back, and that from time to time it will hop off for a spell and grant you a temporary sensation of relief. But grief I have learned, will always hop back on.

It's been three years since grief moved into my heart, well, nearly three years, just a few short weeks to go now before our anniversary, and I can't report to you all, grief and I are still going strong, our relationship has been consistant and dependable. Grief it seems will never leave me, no matter how much I wish it would.

Three years ago tomorrow, my identical twin sons were born. At 5:33 and 5:40am, pink and wailing with heads capped with dark brown hair and precious little features. Three years ago a dream came true. And in just a few weeks we'll solomnly remember that 20 days after our beautiful sons were born, one died. He spent his entire life struggling, he endured too many medical interventions and procedures to list, and he died. The next day we brought just one baby home, one baby, and grief who would fill up every empty space in our home and our hearts.

There's a part of me who is deeply ashamed of the mixed emotions I've been balancing since December 7th 2007. I've been trying to host joy and anguish in my heart simultaneously for just about three years, and it's an incredibly unnatural sensation to try and be loyal to both. I am joyous for Landon who has brought warmth, love and peace beyond measure into our family and into my badly broken heart. He is a miracle, it is by God's grace alone he is alive and perfect and lighting our lives each day. But at the same time, I cannot pretend that life is all sunshine and roses and rainbows just because I have two very lovely and amazing children I would not change for this world. I cannot deny that I grieve. I cannot deny that I long for the one that God took back. I cannot deny that my heart shattered and splintered and has never been restored. I cannot tell you I do not hurt. It would be disloyal to Everett to deny that his birth and his death have impacted my life like a meteor, leaving a giant crater on my soul.

I can't devote myself to joy entirely.

I can't devote myself to grief entirely.

I am a woman divided.

Counting my blessings.

Counting my losses.

Praising the God who gives, struggling with that I am supposed to also praise him when he takes away.

And I am often ashamed, that I can't figure out how to love and honor both boys with the perfection they deserve.

At 5:33am on November 17th 2007, Everett came into his life. He was 17 inches long and weighed 5 pounds and 4 ounces. Landon joined him seven minutes later, at 5:40am, he was also 17 inches long, he weighed 5 pounds and 6 ounces. They were perfection.

On December 7th 2007, sometime after 8pm, Everett left his life. He was 20 days old. He was 17 inches long and I estimate somewhere in the range of 4 pounds when he left us. He was perfection.

On December 8th 2007, Landon came home alone. He was 17 inches long, weighed 5 pounds and 11 ounces. He was lovely. He was like salve to a burn.

What am I to do now?

What reality to I embrace, what reality do I deny? Can I have them both simultaneously?

Will you understand when I am in tears on the day I celebrate Landon's birth? Will you allow me to celebrate the gift they were together and the joy Landon is now, while at the same time allowing my heart to break over the loss of Everett, who was also a gift and as much a source of joy as his death was a source of pain?

Will you remember on this happy day, now that years have passed, that it's not just Landon's birthday, but rather a season of confusion and hope and fear and desperation, of loss and of grief. Will you be mindful that grief lives here still?

Because I cannot forget.

Even in good times, hard times persist.

Even in joy, pain still exists.

Katie

It's that time of year again......

How bittersweet it is.

In just a few days, the birthday celebrations will begin. First comes Avery, we'll celebrate her turning five years old. Then comes Landon, who will be three, and Everett, who will never be more then 20 days old. It just hit me that past few days, why I had been experiencing an increase in tears, aside from being pregnant, my subconsious has been aware this time was approaching, even if I didn't let myself become aware until just now. Now it's time.

Time to balance sweet celebration with bittersweet memories of birth and death intertwined. Time to remember the joy of the delivery of my beautiful twin babies and to relive the sorrow of saying goodbye to one forever, just 20 short days later. Time to celebrate the lives of two of my children, while mourning the loss of the third. Time to put on a happy face for the party and the public, and cry until my tears dry up in private.

From November 17th to December 11th I walk an emotional tight rope. Reliving the most surreal and unbelievable weeks of my life. Birthing babies, sweet tiny babies with pink skin and dark brown hair and beautiful and unending potential. Then sick baby, small, weak, frail baby. Great big surgery on tiny little sick baby. Blood and tubes and bandanges and nurses and doctors, and terror. Fear unending. Driving. Crying. Pumping. Snuggling healthy babies ,barely touching sick baby, can't pick him up, can't hold him, can't change his diaper, can't help him. Tears. More surgery. More tubes, more blood, more fear. Prayers. Mad, frantic prayers. Denial. Brain bleed. Despair. Meeting death face to face. Goodbye baby.

Time to fake my way through this time of year again. Somehow I always manage to do it. I'm not exactly sure how. My sweet beautiful brown eyed children, boistrous, lively, spirited and smart, they most surely help me through. Just as certain as I have something to mourn, I have something to celebrate. They are the life savers that keep me afloat when my grief threatens to drag me beneath the surface.

Happy Birthday to all my babies.

Katie

I am a rambling fool.....

Of all the wounds left unhealed, on my heart and on my soul, many can and will be healed by time.

But there can be no healing for the gaping wound that has been left by the passing of Everett from this life into the next. The most unnatural of wounds, with no known cure, it will forever remain open and exposed, and succeptible to flare ups of pain and tears. And this is perfectly fine with me.

The presence of pain, of sadness and of distress has become familiar, and in a peculiar way, it has become a comfort. Though Everett has no physical presence in our lives, he still has a very real and tangible presence. We feel him daily, by way of our sadness and longing, by way of memories, and by way of pain. It's not entirely melancholy, though I can see how some may see it that way. It is exactly as it was. Beautiful, but painful. Good but bad. Beautiful and ugly. And this is how it still is.

If there can be no Everett in our arms and in our lives, then his memory, and our sadness, and our grief is all there can ever be of him aside from the 20 days he was here to touch and hold and take in.

If this is all there is, then this is good.

And if this is all there is, and this is often sad and pained, then said and pained are good, and I will welcome them as manifestations of Everett come to visit, come to sit by me a while, come to make me feel. And I will welcome the presence of heart ache and the company of tears and cradle them like my baby son long gone to the arms of the Lord. I will treat them like a blessing, like a gift from above, like a small window in time, where the separation between me and Everett is as thin as cellophane, and I can practically feel how it felt to be near him, where I can feel the same emotions I felt on the last day that I held him, and that intense pang of grief will connect us once more.

There can be no healing for this eternal wound. And this is good.

The miracle lies in how time, and how God, and how life have banded together to make grief a beautiful thing, and a positive thing in my world. It could so easily have been a force of destruction. Even more miraculous, grief has born hope. Where my world burned like the surface of the sun and when it was done nothing but ash remained, God worked. God worked and from that ash grew faith and hope so strong that they could not only tolerate, but thrive alongside grief and longing and an inconsolable sadness. Miraculous.

We're always surprised when a storm hits close to home, when it devastates our lives, like these things only happen to other people. We are genuinely shocked then the sky above our own heads blacken and violent winds shake us to our cores. And we cower away and pray that God would have this storm pass us by, and when he doesn't, we shake our fists at the sky and curse him, or renounce Him, declare Him powerless or imaginary, because we had to feel a storm.

Where did that notion arise?

In truth, we all face storms. We're all shaken and rattled by raging winds. And in the end, the sky clears, and the clouds part and across the recently blackened heavens, delicate shades of red and orange, and yellow, and blue, and violet arrange themselves just so among the clouds. And we are appeased. We praise God for the rainbow, but what of the storm? Was he not equally in power then?

When hardships happen, we want to believe they are random. When rainbows dance across the sky we want to believe that God placed them there just for us. In truth, He placed the rainbow, but He also placed the storm.

The trick? To be thankful for both.

Katie

Bittersweet

Today we held a fund raiser, in Everett's memory, benefiting the NICU at our local hospital. It was a jewelry party, all proceeds being donated, and it was really successful.

We celebrated with cake.


And it was unexpectedly emotional.

As I stood there divvying up the cake, I felt my eyes readying for tears. I could feel them heat and water and my chin quivered just a bit. At first I didn't understand this tidal wave of emotion, but then it hit me. This is the very first cake I've served with Everett's name on it. He's never had a birthday cake.

He'll never have a birthday cake.

The need to cry stuck with me through the afternoon. And when no one was looking I stole away to the bathroom to cry for all the birthday cakes Everett will never have.

Then I came out and celebrated the money we raised in his memory, and started planning all the good we'll do with it.

I miss my baby so deeply today.

Katie

It's a heartache......

I'm channeling some Bonnie Tyler this afternoon with these song lyrics:

It's a heart ache, nothing but a heart ache,
Hits you when it's too late,
Hits you when you're down.
It's a heart ache, nothing but a heart ache,
Love him 'til your arms break...........

I've been missing Everett a lot lately. Not to say that I've been missing him more then usual, but perhaps more intensely then usual. This happens, the grief ebbs and flows, intensifies then pacifies.

It hurts in a peculiar way some days, when his name sounds foreign to me, because it hasn't been used the way the other kids names have been used, it's been years since we spoke it to him, it's been years since we spoke it and spoke about him in the present tense. That is, it's been years since the name accompanies a presence. The name alone, some days, feel hollow, like an empty promise.

It hurts to see his picture on the wall and to know that he's an important member of our family, he's on of our children, yet we don''t have him to hold, to touch, to raise, to love, and to raise. Again, it feels hollow, it feels empty, and it feels strangely disconnected. The absence of the connection is what hurts. It hurts to feel distant from him, the weight of his body in our arms, the sound of his cry, the feel of his skin under our kiss, the softness of him. That these are just memories is what hurts so much when the grief rises up.

Where have those feelings gone? The ones we hoped would never fade.
We swore we'd always remember how he felt in our arms, how he sounded, how he smelled, how he looked, what it felt like to love him and parent him. But those feelings have faded without our consent. The memories too. The biggest agony I've felt since losing Everett is feeling as though he is becoming a stranger to me. That he is becoming just a memory, he's not the intense presence I always hoped he'd be. That is a pain I did not anticipate.

I'm trying so hard to cling to the feelings that connect us to the time where we had Everett, when he was real and tangible and touchable, and that often means pouring myself into the deepest of grief and resurfacing the most painful memories to bring up real, painful and still deeply connected emotions, clinging to his memory, wanting to be holding him, holding him so hard my arms would feel as though they could break.

Is it possible, that more frightening then a broken heart is a healing one?

Katie

It was what it was....

Today, and probably more often then I realize, someone somewhere in the world looked at a picture of Everett.

They came across it on Facebook, or on my blog, or found our newspaper article online, and their eyes looked upon my son.

Maybe he was sleeping soundly in a sleeper and knit blue cap, all tucked in with blankets at Sick Kids, before surgery.

Maybe he was wide eyed and curious sporting nothing but a diaper and some monitoring wires.

Maybe he was intubated, hooked up to ECMO, sedated and bleeding.

Maybe the saw the picture of he and I holding hands on his very last day here on earth.

Doesn't matter either way.

They saw him.

They saw him in all his tiny delicateness, they saw his fragility and the precarious nature of his battle.

They saw his beauty, the fineness of his features, his future handsomeness already apparent.

They saw his affliction, they saw what he was up against, and they saw his bravery, and what he was fighting.

They saw him lose.

They saw us break.

They saw him, and us.

Somewhere out there, someone saw my son, and they got it. They felt something for him and for us, and it's a strange but good feeling.

They saw the reality.

They saw the untouched photos, and they aren't pretty. It wasn't pretty.

But, it was what it was.

It was sad, and scary, and filled with panic and desperation.

It was painful, for us and for him.

It was bloody, and messy and complicated and uncharted territory.

It was heart breaking.

It was life ending and life changing.

It was tragic.

It was horrible.

And today, and on many other days I am sure, someone saw that.

And I feel somewhat validated, because I spend a great deal of time feeling like the vast majority of people we know, aside from those who saw it first hand, just don't get it. They don't know what it was. Their minds have cleaned it up, prettied it up, made it nice and neat and easy, but it wasn't. It was exactly what it was.

But here's what else it was.

It was life changing, it was love filled, it was hope filled, it was heart breaking but soul saving, it brought us to our knees in pain but led us to prayer, it was perspective changing, it deepened our capacity to love and to care and to feel. It was crawling over hot coals and coming out on the other side scorched, burned, blistered and bleeding but knowing that we did it, and we could do it again if we had to, and we'd do it again in an instant if we had to. It was bad, but it was good.

It's inexplicable.

But, someone today saw a picture of Everett.

And they pondered him.

They thought about him, and his fight, and our loss, and our broken hearts.

They said his name, either out loud or in their heads.

And that is also inexplicable.

It's inexplicably touching.

(I've got nothing on you baby.....)

Katie

I hate hindsight!

It just further drives home the point, that what's done is done.

We have comfort in faith, but no power, no magic.

We have no ability to travel back in time and correct the mistakes we made that are so GLARINGLY obvious today.

Yes, hindsight, I hate you!

It makes my stomach ache, my heart crumble into pieces so fine it's nearly dust. It fills me with anger and resentment and guilt, and sadness.

Hindsight seems to exist only to rub our stupidity and our rash decisions in our faces.

It thumbs its nose at me, taunting "You messed up and there's nothing you can do about it now!". It practically laughs in my face.

Hindsight is a total jerk.

Not sure why I chose tonight to swan dive into grief. Since I already have a pretty distressing and never ending headache, choosing to upset myself and opting to deal with the resulting tears seems pretty foolish, but nothing about grief is rational.

So tonight, though a tiny voice inside of me was pleading "Don't do it! Don't go there!", I went to the place in my computer where my Everett files are stored, and I started reading. I read every post I made on my mommy message board while Everett was fighting for life. And I cried.

Then I read every private message my friends sent me after he passed, and I sobbed.

Then I watched the only video I have of him on my computer. I saw his tiny body, I could practically feel how soft he was. I watched him breath, and squint, and cry and complain, and I marveled at his tiny little intact chest, pre-surgery, and noted how sick it was at all that I was marveling at the sight of an intact chest, but with Everett, we became quite used to a piece of gauze being all there was between our eyes and his heart. I watched him on the screen, alive, pink, precious, doing things babies do, maybe crying to be held, or fed, or complaining in the only way he could that he just didn't feel right, and then I went totally numb inside. The body, and the mind, they protect themselves from pain like this, otherwise I think I might actually have died from my grief years ago.

Next, I moved onto pictures of him. Pictures where he's sick, but not that sick. Sure he's in Toronto, awaiting open heart surgery, but he's breathing on his own with lungs that are healthy and functioning. Sure his heart is badly deformed, but for now, it's pumping, his skin is pink, he's sleeping, bundled on his side, hands bunched by his face, and he's adorable. He looks just like Landon, which both delights me and kills me all at once, because it drives home the fact that whether I feel like it or not, I actually had identical twins, for a while.

The sight of his hands, tucked by his chin, is more painful then I think it should be. It puzzles me, why that hurts so bad to see, but then it strikes me that it hurts because some moments in his brief little baby life, were normal. And that brings us to hindsight.

If hindsight were actually functional in some way, I could appreciate it. If it pointed out our mistakes and then allowed us to fix them, how amazing would that be!?

He had normal. He had a quasi healthy existence during that first week. And we charged in like heroes set on remodeling his heart and saving his life, but instead I think we trampled on his hope and his health, crushing them like flowers into the ground. WHY OH WHY did we steal his chance to be healthy with our impatience and our panic!?! We panicked and plowed ahead full force with a plan of action too radical and too forceful for him, for tiny little brand new him.

His surgery was practically a beating, we only made him sicker, weaker, and more unable to cope with the cross he had to bear.

This is why I hate hindsight.

If it served any purpose at all, I'd go back right now and tell myself what I know now.

Slow down.

Breath.

Calm down.

Give him time.

Take baby steps.

Wait.

Wait until he's bigger.

Wait until he's stronger.

Be patient, don't rush to fix him all at once.

Rebuild his heart, step by step.

Start small, and work up.

Give him TIME!

Maybe a smaller surgery at first would have bought him time.

Maybe we could have let him heal and grow before doing a total fix.

Maybe his lungs would not have given out.

Maybe he would have never needed ECMO.

Maybe he would have recovered, and been a poster child for CHD repair.

Maybe he'd be a success story rather then a statistic.

Maybe I'd have three kids in my home right now.

Damn hindsight.

But I don't need hindsight to tell me that things could have been different, if only. I only need a video like this, to show me my baby, how he was, normal precious baby, to let me know how grievously wrong our actions were, and how much our mistakes cost us.

Baby Everett Video

I know, I know, many will tell me that we had no way of knowing what the outcome would be, we didn't cause his death, we didn't make mistakes, I know, I know. But it doesn't change the violation my heart feels I committed. Knowing that logically I did everything I could doesn't negate the guilt and the shame and the pain, it only intensifies the regret.

Katie

Feeling compelled.....

...Day in and day out, to have another baby.

It's a constant nagging desire.

A whisper in my ear.

A pull in my heart.

An ache in my stomach.

Day in and day out.

What do I do with that? How do I make that desire come through loud and clear to my husband who's not really on board? How do I convey the gravity of the issue, the out of this world pull it has on me?

How to I explain that it doesn't feel optional to me at all, that it's not something I can "wait and see" about, it's an issue, a NEED that I have to address, and ideally, I'd get to address it soon.

Does it make any sense at all that I feel like I NEED to have another baby? Like it's a desire God placed on my heart, that it's something we're supposed to do, or a gift we're supposed to accept? Does it make me sound terrible if I admit that I think it will further help me heal from my losing Everett and from my miscarriage? Do I sound totally selfish and awful if I say that I think having another pregnancy and baby, and getting to me a mommy once more will feel good, in so many ways, and help smooth over all the things that have felt so bad in my life? Am I horrible?

I don't know how to answer when people say, usually in discouraging tones, "why do you want another", I don't know what an "acceptable" answer would be.

I just do.

I want to be a mommy of a baby again.

I want another child in my home.

I want Avery to share in my excitement, now that she's old enough to get in on the fun, and she wants another baby.

I want Landon to be a big brother.

I want to be pregnant again, and feel a new life grow inside me.

I want to hold a new born in my arms, and nurse them and sleep with them on my chest.

I want a baby in our lives again.

My family is not complete, and never will be, but I feel it calls for another baby, day in and day out.

Why does anyone ever want a baby? Because we want to love them. Because our hearts compel us so. Because we think they're cute. Because we can express our love and hopes for the future in our love for them. Because family is amazing. Because children are amazing.

Because I need to.

I would know if I was done. I would feel it.

And I know that I am not done.

So what now? What does this aching mama do with her growing desire to mama one more? Where do I put it? How do I handle it? I am on fire with want for another pregnancy and baby, what now?

All that can be done is prayer. Prayer for God's will do be done.

Prayer for God t hear my heart call, prayer for his guidance and intervention.

Prayer, that fear would subside and hope override, and that God's will is that our family receives a new addition, and soon!

Please.

Katie