On being real.

I feel like a fake. A fake with a fake smile. A fake attitude. A fake person who doesn't really care. A fake.

When you ask me how I'm doing and I say ok, then I feel like a fake. You don't really want to know and, really, I don't really want to tell you cause what I really am is a fake. I can fake being excited for your new haircut. I can fake smiling and talking and caring about your plans. I can even fake being happy for my children. But it's all fake. Cause, really, if you really want to know, I'm doing damn awful. But I don't want to tell you that and you don't want to hear it cause were all a bunch of fakes.

And one day last week I told someone who asked me how I was doing that my whole life was a fake...it was probably the most real thing I've said in awhile. The truth is that I'm a fake.

My grief counsellor asked me a long time ago if I could fake it...he said sometimes you just gotta fake it till you make it...but I wonder when will all this fake start to feel real? When will faking it end and real begin?

The only time I feel really real is when I curl myself around Nathan, breathe him in with love and remember Eva and weep. Cause that's what's real in my life. Love and sadness and Jesus. Everything else is fake.

I've been faking it for a long time...when will I get to start making it?

Let's talk about death challenge: Day 29

Sometimes, when I cry it feels like my entire soul is being poured out through my eyes.

Let's talk about death challenge: Day 28

It's interesting how my perspectives on what is truly important in life has changed dramatically.

Let's talk about death challenge: Day 27

Eva, you've taught me true pain and true compassion. You've taught me how to be alone but never lonely. You've taught me how to be silent in a crowd. You've taught my heart to yearn for heaven.

You've taught me to be present in others' pain. To not brush it aside. To simply listen and accept, knowing I can't fix their pain but I can simply be in it with them.

Let's talk about death challenge: Day 26

Right now. Summer.

June to August.

Eva got sick in June and died in August. Could this time be any worse?

Let's talk about death challenge: Day 25

I have learned that I am both weaker and stronger than I thought I was.

Too hard? Too good? Too crazy?

I've been really struggling with June. This time two years ago Eva was fighting for her life in ICU in Edmonton. And she won. At that time. It wouldn't be till later when surgical complications would kill her.

I've just been watching some home videos of Eva today. God, to think I really, really did have that little girl once. She wasn't just a photograph or a memory. She was a joy. My joy. God, I miss her so much.

I love summer but I hate it too. Hate how fun it is. Hate how Eva's only summer with us was pain-filled for so much of it. Hate how time keeps marching on. Hate how I can feel joy again. Hate how I can talk easily to people and feel like Eva is forgotten. Hate how I can see beauty in her death, because, why the f*ck is there beauty in the death of a gorgeous little girl?

The tears stream down my face as I remember. Remember the little girl that once was mine. Remember my innocent joy. Wonder at how many people must have been jealous of me then. Three sons, one daughter and then Little J, just falling into our laps. Well, no need to be jealous anymore. Now we are your worst nightmare come true. ( Still I am well aware how damned lucky I am).

Sometimes I feel like I grieve too hard. Others I know who are well behind me on this forsaken road seem to be doing much better, even to me. They are handling the loss of their beloved child with a grace that I just wasn't, and perhaps still haven't, been able to muster.

Other times I feel like I'm doing better than I should be doing. Should I not still be a sobbing mess of tears on the kitchen floor? Why am I able to joke with people? Why am I even beginning to forgive the people who weren't willing or able to be there for us in the darkness following Eva's death? Why am I not still weeping daily? Did I not love my daughter enough? Why am I not suffering more than I am?

 Then there are the times I feel like I am going crazy. I sometimes catch myself thinking we're still in 2011. What's with that? I know the month but don't know the year? The grief physically ransacks me at times and the RAGE consumes me. Am I going crazy? What is crazy?

And then I look at Nathan and pure love and fear fills me. Love for this little boy that would never exist without the death of his beloved sister and who I can't imagine not having (rather, I can imagine too well) and fear that he will die too. With those thoughts  I wonder...is my love so fickle that I have allowed Nathan to heal parts of me I didn't know were broken. That I can't imagine Nathan gone but am living daily with the lack of his sister and what I really want is both of them. Both of them. All of them.

I fear for all my earthly children (cancer is always on my mind) but there is a special fear that accompanies Nathan's every breath. Watching Nathan is like watching Eva. Every breath he takes closer to 10 months takes me closer to her death. Ah, sweet Eva, I miss you so my dearest girl.

Let's talk about death challenge: Day 24

I am grateful for the time I was given to spend with Eva.

I am grateful for the memory of her smile.

I am grateful for the last time I got to nurse her (in a parked truck on the side of the highway).

I am grateful she was laughing with her daddy when she collapsed. Grateful that her last conscious moment was joy.

I am so, so, so grateful for Nathan's life.

Let's talk about death challenge: Day 23

I have already asked Jesus and he has answered...

But, lingering always is, why?

And, I know I'll never know this side of heaven why. I know that this side of heaven is full of pain but I anticipate the day of holding my precious girl again. When?

My one, unanswerable heart's cry remains.' Give her back, please, oh please just give her back'

Let's talk about death challenge: Day 22

Once I woke up sobbing in the night. It was powerful.

Otherwise, my dreams have remained, generally, disappointingly similar to the dreams from before her death.

The main thing that has changed is what I wish I could dream about. I prayed nightly for the first year for Eva to come to me in my dreams. It never happened. I still wish it periodically. To hold her, even just in my dreams...

Let's talk about death challenge: Day 21

I used to be able to talk to many people. Laugh about inconsequential things. After Eva died I literally was able to freely speak to about two close friends plus my husband and children. Everyone else drifted away or I drifted from them. They could not speak to my pain and I could not explain.

It's almost two years now since her death. I am able to, once again, chat about inconsequential things but when I do, I'm always thinking about Eva.

I was betrayed by three people in my grief journey. A, K, and R. I will probably never speak to them again in any sort of a meaningful way. While I may forgive I will never forget those who betrayed me in my darkest hour. I will also never forget those who walked through the darkness with me. H and C are my closest friends as they were able to come alongside me in the discomfort of the darkness.

Before Eva died those two groups would have been lumped somewhere together with varying degrees of appreciation. Now, there is a deep divide between those who stayed and those who betrayed. And, lingering somewhere in the middle of those two groups is everyone else. Those who neither stayed not betrayed. Neither comforted nor caused pain. The group that drifted away, only to return now, when I am, once again, able to chat about inconsequential things.

Let's talk about death challenge: Day 20

Still and silent, alone.

Maybe because it is usually noisy and chaotic in my house...the stillness is my time with Eva.

Let's talk about death challenge: Day 19

Big and public: Eva's Ride

Small and private: Eva's trees and Eva's Garden.

And sometimes, especially in winter, we have her candle glowing on the table. I blow it out and say good night.

Also, I am learning to knit.

Let's talk about death challenge: Day 18

Eva's funeral was amazing. I was able to lift my arms in worship to God. I felt God touch me, literally. He gave me the strength to walk on stage and read a poem and say something. It was all about Eva.

I loved her funeral, except that I hated it.

Let's talk about death challenge: Day 17

I feel closest to Eva in Edmonton, at the Stollery hospital and at Ronald McDonald House.

That is a place that is almost all hers. Her brothers visited but didn't stay. Everywhere I turn around there I see her ghost.

Let's talk about death challenge: Day 16

One day, I hope that I will welcome Hope and then I will feel...honestly, I have no idea.

Let's talk about death challenge: Day 15

I used to be able to think clearly and cohesively. I could make decisions and follow through. Now I'm wishy washy. Not sure of myself.  Afraid.

I also used to be able to have superficial relationships with people. Now it's either real or it's not. Nothing in between. I just don't have the energy for it.

I also just feel more. Can't explain it. You either get it or you don't.

Let's talk about death challenge: Day 14

In the first weeks I was in a black hole of grief. The sides were tall and smooth. The blackness was all-encompassing and there was no escape. I wept every single day as the enormity of my loss loomed larger every day. I sobbed in the shower, in bed, on the kitchen floor.

Today the grief is softer. I still miss my little girl so much. Miss the two and a half year old she should be. But most days are easier. Then the days come where I can feel myself sinking into that black pit of despair. When that happens I just go there. I try not to fight it. I sleep if I can. I forgive myself for my inadequateness, the laundry piling up, frozen pizza for supper, the sink full of dishes, and grieve, because, after all, I have the right to grieve. Still and always. It seems to only come a day or three at a time now. I know I will catch up on laundry, cook a real dinner, wash the dishes and smile again.

The biggest difference between then and now is that now I know when I sink into the blackness, it will recede sooner or later and light will shine through again.

Crappy Father's Day.

Father's Day today. I cannot even bear to wish a happy father's day to the man I love who stands by my side as we raise our children.

Father's Day 2011 Eva was airlifted to the Stollery and I glimpsed the gates of hell. 2 months later she would pass through the gates of heaven and, despite the joy that I have, my life has been hell ever since.

And Friday was Samuel's 7th birthday. And Nathan's 2 month birthday. Both on the 14th. I'm thankful they do not share the 15th with Eva.

Yesterday was another 15th. It was such a hard, sad day I couldn't even write. And that's saying a lot because writing is my outlet. Writing is my gift. Writing is my all that I have and I am rarely at a loss for the written word.

We'll be back to our death challenge soon. I just don't have it in me right now. I am empty.

More than I ever wanted to know...

We are just home from Edmonton. Ah, Edmonton, city of many triggers...

Not only are we just home from Edmonton we went to the cardiology clinic at the Stollery. We saw so many doctors, nurses, social workers who remembered Eva. Who remembered her eyes and her smile. 

It was oh so painful to go there and also oh so healing. She is remembered.

We went to 4C where Eva stayed and I felt myself get carried away by magical thinking...like Eva was hiding in one of those rooms and, if I only looked hard enough, I could find her. But that wasn't to be.

We met with Eva's cardiologist, Dr. K. Dr. K went over Eva's autopsy report with us. Stab. He explained it to us and showed us photographs of Eva's heart and where the rupture is. Stab. We knew this already but he also confirmed to us that her death was a complication to surgery. Stab. How come my own heart has not broken from the pain, I cannot answer.

I'm home now with my own personal copy of Eva's chart and autopsy report, photos of her heart with the rupture (the size of a pencil tip) and official diagnoses (1. Idiopathic ventricular tachycardia. 2. Sudden death)

I never wanted to know the weight of my child's heart (49 grams). I never wanted to know the weight of her ovaries (0.7 grams each). Her ovaries. My grandchildren were already there. Her uterus. It will never be used to hold a baby within. I will never put my hand on her belly and feel a baby kick. There are so many losses with the loss of Eva.

Eva weighed 7kg when she died- 15 pounds. 15 pounds! She had gained a whole pound since she had last been weighed two weeks earlier. She was growing. She was improving. Until she died. Oh, child of my heart, daughter of my womb. I miss you so.

One of the most heart wrenching things for me in that autopsy report was the external report. The report of all that I have kissed, caressed, and loved. Cephalic hair is abundant, brown in color and measures 5cm in maximum length. Even her hair was growing. Oh, my sweet girl.  The left foot measures 9.2 cm and the right foot measures 9.2 cm. There are five toes on each side and are of normal shape and size. And I kissed every single one of those toes. Every single one.

In some ways I envy the guy who performed the autopsy (what are they called anyway?). He was the last one to touch her whole body. When I got her, there was a cloth wrapped around her torso to hide the scar of the autopsy. I didn't get to caress her belly or her chest.

I wish we had stayed longer in the hospital room with her. I wish we were still there. No matter how long I had stayed, I would have wished to have stayed longer. I'm sure I'm not the only one to feel that way. Cause the truth is, it is never long enough. Never long enough.

It's just coming on two years since Eva was admitted to the hospital on Father's Day weekend. In another two months it will be two years since my precious girl died. It's a long time to wait on an autopsy report and we did try to meet with Dr. K earlier but the Stollery is a five hour drive away for us and whenever we were in town, he was not.

And now I'm glad we waited two years to get this report because, while it feels like yesterday, it wasn't yesterday that she died. I am way more functional than I was even one year ago. I can read and retain information. And, no small thing,I have a baby to hug and to hold. Toes to kiss and the weight of Eva's little brother in my arms. Nathan Evan helps the most of all.

And that little brother also went to the cardiology clinic this week. He got an EKG and an echo and a holter monitor done. Everything looks normal for him. Thank you God.

Nathan Evan also weighs almost 13 pounds at two months old. By the time he is three months old he will probably weigh more than Eva did on her 10 month birthday. Her heaven day. I wonder how much she weighs in heaven...does anyone weigh anything there?

As Nathan was wrapped up and lying on the table getting the echo done we put a little toot-sweet on his soother so he would suck it more and lie still. I did not like holding him there. I think there is a part of me that still magically thinks that if I have another sick kid that I will, somehow, have Eva back; but when I held little Nathan on the table I cried. I do not want another sick kid. I want a very specific sick kid. My little sick Eva, whom I miss so much. I want to hold her for yet another echo. I want to sit next to her bed in recovery. I want to see Dr. K on a regular basis and have the nurses exclaim how big Eva is getting. I want to be in Edmonton for cardiology appointments for her.

Because, truth is, I much prefer living at home and sleeping in my own bed with my children down the hall than living in the hospital and sleeping on a cot next to my child. I do not miss the hospital. I miss what the hospital used to contain.

Let's talk about death challenge: Day 13

Myself. And  God.

It feels good. I just went through that for the first time a couple of weeks ago.

Myself for not seeing that she was failing. For not pushing hard enough for care early on in her journey. For not asking for an echo in Edmonton before we left for home (even when I felt like I wanted to but I was so excited to go home!). For not telling the paramedics that she had a heart condition and to hurry, hurry, hurry to the hospital instead of trying to stabilize her in the ambulance. It still brings tears to my eyes to think of that ambulance. Why did I stay there mute? Why did I not scream that she needed ECMO? Why did I think they knew?

That is what I need to forgive myself for...and that brings me to God.

God, for not letting me keep her. I hated God because I wanted her with ME! Not with him. With ME! I have forgiven him for taking her. She was always his anyway. Right from the very start. From life's first breath to final cry. Eva belongs to him.

Let's talk about death challenge: Day 12

Butterflies and sunflowers.
Portulaca roses and hearts.

Let's talk about death challenge: Day 11

Anger is the hardest to cope with. It just springs out of nowhere and rages!

The sheer loneliness and missing of Eva has been the hardest long-term.

The wondering what she would be like.

The missing person in our family photos.

The pink that could have been here.



How am I coping?
Forgiving myself for the anger. Praying and hoping that tomorrow is lighter.
Making time to spend with her and mother her in the ways that I can.
Planting pink flowers for her.
Looking at little girls the same age she would have been with tears and wonder.
Having her photo in our family photos.
Talking about her openly with people, despite the discomfort. She is part of our family.
Blogging.

Let's talk about death challenge: Day 10

...your glowing smile.

Let's talk about death challenge Day 9

That she is always a member of our family. An invisible one, but one nonetheless.

That she matters to me all the time, every day.

That she is with me always, in my sorrows and in my joys. She is there. Always.

And that it is not over.

Let's talk about death challenge: Day 8

There is a space in the middle of my chest. Beneath my collarbone but above my breasts.

A space where I felt physical searing pain for months after Eva's death. I cannot say when the pain subsided but I know that it comes back periodically and then I remember that it's not always there.

Family Camp...again.

This weekend we went to Family Camp with our church. Two years less one week ago we went to Family Camp with our church family as well. It was there that we first noticed Eva's laboured breathing. It was from there that we went to ER and were admitted to our local hospital. It was from there that Little J went to respite care for a couple of days (she did not come home to us until thanksgiving 2011, 2 months after Eva died).

Family Camp feels like the beginning of the end...even though the dates are different this year...We left Family Camp and did not come home until August 3rd 2011. 11 days later, Eva would be dead.

Family Camp is the beginning of summer. The beginning of the season of pain. Family Camp...where my whole family will never be again...

Altogether, last year was the ultimate worst Family Camp ever. No Eva. Not pregnant, and wishing I was. Bereft and empty. Lonely in the ultimate sense of the word.

This year Family Camp was exponentially better. With Nathan. With Samuel. With Vincent. With Theodore. With Little J. With my Mike. With Eva in our hearts, always (love you so much sweet girl).

Let's talk about death challenge: Day 7

My friend Holly has seen me through the darkest moments and, because she shared the profound blackness with me, has been the one I have been able to share my joy with also.  Thank you Holly.

The other most helpful thing has been grief counselling for the first year and Wednesday night prayer meetings with Faith, Chantal, Holly, and Jesus.

Let's talk about death challenge: Day 6

Yes, and I will never forget.

R and K are the two that have magnified my pain through words and yet...mostly,

the wound of words misspoken is lighter than the wound of silence in my darkest hour.

Let's talk about death challenge: Day 5

i carry your heart with me(i carry it in

my heart)i am never without it(anywhere

i go you go,my dear;and whatever is done

by only me is your doing,my darling)

                                                      i fear

no fate(for you are my fate,my sweet)i want

no world(for beautiful you are my world,my true)

and it’s you are whatever a moon has always meant

and whatever a sun will always sing is you

here is the deepest secret nobody knows

(here is the root of the root and the bud of the bud

and the sky of the sky of a tree called life;which grows

higher than soul can hope or mind can hide)

and this is the wonder that's keeping the stars apart

i carry your heart(i carry it in my heart)

 

e.e cummings

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Let's talk about death challenge: Day 4

I believe that there is heavenly life after our earthly death. Jesus made that possible for everyone. And I believe I will see my sweet Eva again. I hope she is the first person I see when I get to heaven. I can barely wait.

Let's talk about death challenge: Day 3

Yes.

Let's talk about death challenge: Day 2

I want Eva's ashes in my casket, buried with me and a headstone with both our names and dates on it.

Let's talk about Death Challenge Day 1.

Jumping in a little late but here we go...



Sometimes I see an inner eye-roll, oh here she goes again... (I feel closed and guarded when this happens)
.
Sometimes there is sympathy or pity ( then I feel like I'm someone's worst nightmare...and I am)

Sometimes Eva just flows naturally in and out of the conversation and that is what I like best...when she is just 'one of the kids'.

A little flower...

A little flower
lent, not given.
To bud on earth
and bloom in heaven.

-author unknown

There are days...

There are days where I look at the ticker on this blog.

Days when I am so surprised the year is 2013.

Days when I feel like I am still living in 2011. How can it possibly be 2013...

Days that I just cannot believe this is my life.

Days that it still seems so surreal that my child died.

Days when I wonder how this can possibly be my life.

Days when I truly hate the life God has given me.

Days when I am surprised at how few heads are there in the head count.

Days when I can never get the right number of plates on the table.

Days when I am surprised by joy.

Days when I know there was/is a purpose in Eva's life, and her death.

Days when I am so in love with my walking children and in complete gut-wrenching pain that my soaring daughter is not here to hug and to hold.

Days when I wonder if I'll ever get a glimpse of why...

Days when missing her is so all-encompassing I cannot see beyond the pain.

Days when I truly love the life God has given me.

There are days filled with confusion, joy, pain, heartache, gut-wrenching grief, and ultimately, trust.

Through all the days the underlying message is trust. Trust God through the terribleness. Through the grief, the joy, the pain, the confusion, the heartache. Trust God.

Ultimately, what I am saying is that there is no easy way to get through my daily life. No formula, no schedule. Just trust.

 As crazy as it sounds (even to my ears) I am trusting God through the death of my precious Eva.

When it seems humanly impossible to go on then I remember that all things are possible with God. Even me continuing to breathe through these past 21 and a half months.

Impossible but possible.

The Birthday Gift

Today is Mike's birthday.

Little J gave him a gift in the manner of little girls and boys...one of her own toys.

She wrapped her only (and very loved) doll in a blanket she has just received and laid it on our bed.

She says it's a gift for Daddy and Mommy together. Her baby. Her treasured possession.

The gift of her baby, though impermanent in nature, spoke volumes to my heart from Little J's heart.

She must know how much we miss our little girl...and, in her way, is trying to give her to us.

I may be reading more into it than there really is, but that's okay.

Cause it's only the love that matters.

Despite all appearances...

Despite all appearances on this blog, I am actually quite an average (although above average height) person and, should you meet me in the street, you would think me a totally average (although with above average amount of children trailing along) person.

It's only when, like with everyone, you dig a little deeper. You read this blog a little longer. You care a little more that you can see the grief and love for my little girl that seeps into everything I do. That colours every interaction I have, with everyone.

Right Where I Am 2013: One year Nine months Two weeks Four days.

This post is part of Angie's Right Where I Am Project.

Right where I am today is a mixed emotional bag. Most days are better and I can see the light. My reading list is not only full of grief blogs but also includes a mix of homeschooling and healthy food blogs. 

And yet Eva accompanies me everywhere in my heart. She is still just as close to me as she was when tears would spill at the mere mention of her name but the pain is softer, somehow.  The love is there but the pain is softer.

Sometimes I miss the pain. Miss the closeness to Eva that the pain brought me. And sometimes, without warning, the pain is back. Wrenching me back to the black, early days of life without my girl. And the pain is welcome now. The pain tells me that I will never forget. The pain tells me that my heart will never be really whole again. I may be able to smile with my whole face now but Eva's spot in my heart will never be filled. The pain of missing Eva now is tinged with a slight sweetness for having been given the gift of loving her at all.

Today I can see and enjoy the sun when it shines. I am actually happy that the darkness of winter has left for another year. We just picked up flowers for Eva's Garden again and planted them two days ago. We planted a couple of varieties of sunflowers. Eva was our little sunflower and the two varieties we planted are called Miss Sunshine and Firecracker. Eva was both of those things. There is another variety called Big Smile that I'd like to get but haven't found yet. I also bought a box of portulaca roses for myself for mother's day.  Those portulaca roses are my favourites and they are just so Eva to me. Can't pin down exactly why but tending them is like tending my girl. Just love those roses. 

In the middle of writing this post I left for a farewell party for some friends of ours and I went through another first while there. I'm surprised it didn't happen sooner...while there a couple I didn't know was holding their baby girl. I asked them what her name was and the response was 'Eva'. I was shocked and left the room. I cried in a storage closet for awhile but was able to come back to the party and eat dinner, make conversation and tend my children.  I knew the day would come that I would ask a mom her daughter's name and that, one day, the answer would be Eva. Today, at One year, Nine months, Two weeks and Four days without Eva was that day. Another hurdle passed and I'm still here, still standing.

Life is bittersweet now. Our rainbow, Nathan, has certainly improved our lives significantly but it is not his job to heal us, although he does. His job is to be a baby. To be cute, to cry, to eat, to grow and very importantly, to breathe.

His birth has created a paranoia in me that was never there for my other children. I check his breathing several times per nap and many times at night.

The pain is lighter but there are days or moments, that catch me unawares, in which I think it might just be less painful to take an axe to my chest and literally cut my heart out than it is to keep going day by day by day. And, despite that, yes, it is a lighter load. Really.

This is Right Where I Was last year at 9 months 21 days. I just re-read that post and, yup, I'm definitely in a better place this year.

Thanks Angie for creating this project.