Motherhood – a definition

What does it mean to call yourself a mother? How do you define it?

Once you call yourself a mother, what happens to that label, that part of your identity if your child dies? Are you still a mother? How do you keep that part of your identity when to all intents and purposes you have left motherhood behind? How do you keep your child as a part of your life when new people meet you and don’t know about them? How do you keep that child as part of your life when you move and pack up her things?

A Fugee friend recently shared an article with our group about how to interact with parents who have lost a child. It talks about the emotional and mental space a parent finds themselves in after the death of a child and how you can support them.

Another mother from the Fugee group who lost her son, just days before his 2nd birthday, commented that something she found difficult was when she was pregnant with her second child people would ask, “is this your first?”

Such an innocuous question. One I was asked many times when Eva was in the NICU by well meaning nurses, doctors, social workers and paramedics. It’s one I’ve thought about since Eva died. If I were ever to have another child, that experience would be so bittersweet. Because a new baby doesn’t erase Eva. Eva will always be my first child. But to a stranger, to a new friend who never knew her, that question is so loaded. They don’t know Eva ever existed. They ask, innocently, about the status of a new  baby without realising that if I answer that question I will drop a bomb on the conversation. I will turn a moment of casual conversation into something very different.

This Fugee Mama, who lost her son, said she has come to anticipate that question in certain situations and has gotten quite good at answering, accepting the condolences, and moving on with the conversation. She said she sees it as an opportunity to honour her son by acknowledging him to someone who never got the chance to meet him.

I feel Eva’s absence everyday. The idea that someone could see me and not know that I had a daughter feels alien. One small way I comfort myself is by wearing two necklaces around my neck to represent Eva. Both have the letter E on them. I see myself in the mirror and look at those letters and it makes Eva feel like a physical presence in my daily life. As well as being a vivid memory and a part of my heart, she has a place around my neck. She has weight and leaves a physical imprint on my skin.

In two weeks I will be shifting house I will be leaving the house Eva and I lived in together. It was already planned. Eva was supposed to be taking this next step with me. This was supposed to be an exciting journey for us. Moving out together, just the two of us. But instead, I am doing it by myself, and with this move I feel like I am leaving our life behind. I feel like I am reluctantly shedding my mother identity. I’m excited about the apartment. About having my own space and giving Jay and Ess back theirs. But that excitement is tinged, surrounded, engulfed, by the feeling that it means I am losing Eva once more. Losing the concreteness of her life. Losing the essence of what we had, day to day.

I have packed up her room. Her cot is dismantled. Her clothes are in bags. They are packed, but they are not going away. They are coming with me. I want what’s left of her life close to me. I’m not ready to put them away.

People have asked me whether it’s wise to live by myself now that Eva’s gone. They assume I’ll be lonely. they worry. they think that company will make me feel better. Maybe they think I should go back to living in a flat with other 30 somethings. But what they don’t realise is I can’t go back to living like that. I can’t ignore the last 18 months of my life and pretend I’m not a mother. Pretend I can start a fresh.

I don’t want to do that. It feels dishonest and wrong. It feels like I’m trying to forget. Most of all, I don’t want to try and be the person I was before. I don’t want to feel like the “other” in a flat of people who can’t imagine what this feels like. Who aren’t parents and can’t relate. They shouldn’t have to relate or understand and I don’t want to try and make them understand.

Living by myself means acknowledging Eva. It means I don’t have to put her things away. I don’t have to put her away. It means I get to say, I am still a mother. I am not who I was before she was born. I am who I am now. I am who she turned me into. Someone who I hope is better.

I’m sure there will be nights when being by myself is not what I want. But I also feel like I need those nights to mourn my daughter without worrying about waking up a flatmate. I want to be able to let my grief take up space when I need it to.

This move was supposed to be me and Eva together. I don’t want to pretend that that wasn’t the case.

So I’ll be hanging my pictures of Eva on the walls. I’ll be laying her toys out in what would have been her room. I’ll be watering her kowhai tree and lighting her candle. And I’ll be hanging onto the thought that just because she isn’t here doesn’t mean I am not a mother. Her mother.

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One month – 180 degrees yet again

Tomorrow marks one month since Eva died.

One month since my life changed again. In the last year I have been spun 180 degrees time and time again. Each time I have staggered and then found my bearings. Sometimes it took longer to get back on the path than others.

This time is not the same. Each adjustment before this one required a shift in perspective. When Eva was born I had to adjust to a new view of life as a parent. I was now the parent of a very special child who needed more from me than I ever knew I had to give. I was spun around again and forced to readjust again when Eva’s Dad left and I found myself as a single parent. There were myriad smaller adjustments as news about Eva changed. Improved and worsened. Each doctor’s appointment seemed to bring with it a drive home where I had to readjust my own goal posts. My position on the field was never fixed.

But this adjustment is not fair or right. I don’t want to accept the world without her in it. I don’t want to accept that this is the view from now on. I want to bash my fists on the ground and have my way. Just this once.

I want the last month to be a dream and I wake up at 6am to the sound of Eva’s hedgehog snuffles through the baby monitor.

I want to open my eyes and find that last 180 degree turn never happened.

i carry your heart

I almost feel bad pouring out these words of grief onto the keys each day. My usual worry about burdening others with my own pain flickers in the back of my mind. I know these words have made people cry. Part of me feels bad for that, and part of me thinks Eva deserved everyone’s tears.

I am writing this all down mostly to work through it. I’m not being selfless, I’m trying to process my own grief. Get it out. Examine it and feel it.

If my writing helps someone else in a similar situation, I’m glad of that, but right now my motivations are to get myself through each day, week, month without Eva. And that feels like a big enough mountain right now.

Today I watched some videos of Eva. This is the last one I got of her. She’s sitting in her corner seat having her breakfast.

Sometimes when I watch videos of her I laugh and smile at the baby in front of me. But today, I looked at her face and felt myself lifted up off the ground and flung to the wall like a marionette cut from its strings. I saw my body jerk and crumple, all the energy and life gone from it. My limbs useless and limp. The grief snatches me up, with no real warning. It leaves me for hours to teach and plan and go the supermarket, only to fling me around at a whim when it feels like it. It’s exhausting.

But like so many people have said, a big part of me doesn’t want those rag doll moments to leave, because in those moments, when I am crumpled in a heap, my strings cut, I feel the raw love for my daughter. I feel it with every muscle, every vein, every tendon. I breath in and feel it filling my lungs. I hold my breath until that love burns me. And then I let it out and I sob.

After a while, I start to feel my limbs ironing out and straightening. I feel myself restrung and realise I can stand up again. I know that this feeling is temporary and that at any point my strings could drift down again, unconnected to their anchor, and instead of dreading it, I take comfort in that. Eva’s presence, my love for her, isn’t a string to be cut. It will not disappear.

And even when I can stand and it has been days, or weeks, or months since I last crumpled, she is still there. In my muscles. My tendons. The air I breath.

At Eva’s funeral I had an E.E. Cummings poem put in the program. I had wanted to read it, but knew I could never get it out, because it was too real. Too perfect.

[i carry your heart with me(i carry it in]

BY E. E. CUMMINGS

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)

“[i carry your heart with me(i carry it in]” Copyright 1952, © 1980, 1991 by the Trustees for the E. E. Cummings Trust, from Complete Poems: 1904-1962 by E. E. Cummings, edited by George J. Firmage.

Not “for the best”. Never “for the best”.

I heard a rumour the other day that made my skin crawl and my stomach lurch

I heard that someone in passing had mentioned that Eva’s death was perhaps “for the best”.

I heard that and my skin went hot and prickled. My fists bawled up. My stomach knotted.

I thought of my baby, so happy in her new chair the day she died. I thought of her kicking her feet and bouncing in the chair. Finally, she could sit up properly and take part in the world like she wanted to. I thought of putting her to bed, not knowing that that was my last moment with her alive.

I wanted to punch something. This death was not “for the best”.

I wanted to know more. To know who had said it and what they had meant. But I couldn’t get those answers. Rumours are rumours after all.

It got me thinking about how I might have reacted a year ago if I had seen someone else go through this. Before I had Eva I might have thought something similar to that rumour. I might have seen a child with Eva’s conditions and assumed the child in question was somehow living a life of less quality than most. I might have assumed they were suffering from their disabilities. I might have assumed the parents in questioned were burdened in some way and were suffering in that place. I might have looked on, in my ignorance, and thought it was for the best for everyone. An end to pain and struggle, suffering and stress. I might have looked on with pity, at both the parents and the child, and thought a death like this might be “best for everyone”.

While I know some conditions are painful and challenging, and others cause distress and suffering, there are no two cases that are the same. You cannot judge someone’s quality of life, their right to live and how much they are enjoying that life, based on your own perceptions of what a “good life” is. I will never know what it felt like to be Eva, because her difference in senses are something I cannot even begin to imagine. Any attempt falls short of her reality. Any attempt does not do justice to her life experience because I’m still seeing it through my seeing, hearing brain.

When Eva was born I worried for her quality of life. In my ignorance, I assumed she would have none. I pictured her crawling across a silent and dark room and it made me weep. I was quickly proved wrong. I was happy to be proved wrong and i looked back and thanked her for showing me how wrong I was.

Eva got more out of life than most people ever do. She smiled more than I do and enjoyed the smallest things as if they were the world. Because they were. They were her world. Just because her world looked, smelled and felt different to mine, or yours, doesn’t mean it had any less value. Any less worth. Any less quality.

Eva had a very high quality of life. And her death was not a blessing, or “for the best”, or a release for anyone, least of all me. Eva deserved the chance to live her life with the happiness she brought to everything. She was not suffering or in pain or struggling to live. She was happy and exuberant and loving every minute here.

This baby had all the quality of life anyone could hope for.

Her death does not set me free or put away any pain for her, it leaves a huge hole which cannot ever be filled. It is senseless and tragic and painful. It is not for the best or a good thing.

I cannot blame those whose minds take them to that place when they hear about a baby like Eva dying. I know there was a time I might have thought the same. But in that time, if I’m honest with myself, that belief came from a place of ignorance and a place where I thought people with special needs had less value than anyone else. That having a disability or special need, or whatever you want to call it, made your quality of life less. Like these people were missing out, as if those of us who have sight, and hearing and hearts without holes are somehow better.

But we are not.

Eva was better and Eva enjoyed life and Eva dying is not “for the best” for anyone.

I don’t know who it was that said it and I don’t want to. I only know if anyone tries to say it to me or within my ear shot, words will be spoken and fists will be bawled. And I will not stop giving voice to my daughter until they understand.

Grief, it gnaws

I picked up Eva’s ashes yesterday.

The funeral director gave me a hug and told me if I needed anything to let him know.

I walked down the street to my car carrying the white bag. The weight felt flimsy in my hand. Heavier than I’d expected, but lighter than the weight of a life. Even a small one.

I felt the string handles gently tug at my hand and thought about the weight of Eva in my arms when she was alive. The difference in the way that weight felt compared to the feel of the string in my hand is immeasurable.

This week I have felt Eva’s absence like a weight Like a gnawing in my chest. Each day I have driven home from work and felt a physical pulling in my gut. A craving and need that I can’t fill. Grief has chewed at my insides until I have felt raw.

I’ve missed people before. I have known a version of this feeling. The difference now is the distance can’t be broached with an email, a Skype, a letter. I don’t have a visit to look forward to in a few months. There is no way to staunch this empty hollow in my stomach. No way to feel Eva’s weight in my arms. No way to satisfy the gnawing creature that lives inside my chest.

Watching videos only heightens the feeling. Looking at pictures doesn’t bridge the distance because there is no end to this bridge.

My arms ache with the lack of her presence. My head feels heavy. My stomach roils when I catch myself forgetting.

And yet I keep walking. Keep working. Keep looking ahead.

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Occasional Grief of a Special Needs Momma

Oneinamillion:

She gets me everytime. EVERYTIME.

Originally posted on Star In Her Eye:

At some point this week—I can’t quite name the day—I woke to a quiet grief that had something to do with Fiona. I hardly noticed it at first.

Where did it come from? What’s it about? The grief seems as silent as that foot of snow still on the ground. The snow has melted some. This part isn’t metaphor. The snow started melting around here on Monday, filling the roads with streams. Water dripped from the gutters. The snow melted into puddles for Petra to splash in. Then it refroze. Now the walkway to the car is coated in ice. The bare branches wait stiffly. We’re looking at snowflakes on the five-day forecast.

My grief seems as silent as the foot of snow still on Fiona’s school playground. All winter, the playground surface has been inaccessible to her walker. I park the car in the school lot and watch a…

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Three weeks

It has been three weeks since Eva died.

In some ways that night feels like a lifetime ago. In others I feel like I’m in it all the time.

I don’t feel traumatised by it but occasionally I do find myself replaying scenes in my head.

There are a few I stick on.

The moment I picked up Eva. She went from coughing and crying to gasping which quickly slowed down to nothing. There was a moment’s pause before Ess asked me, “Is she ok?” And we both knew she wasn’t.

Then when the paramedics arrived I rush around packing Eva’s things. I thought we were in for another long hospital stay. All sorts of things were going through my head including what I would have to set for relief for my classes and how long I would need to take off. At some point before I fell asleep that night I sent my Head of Department an email outlining what my classes could get on with. I don’t remember doing it. I was on autopilot.

I sat on the floor by the kitchen and put on my sneakers. I was busy. I wanted to make sure I had everything packed for the ambulance ride back to the hospital. It took a long time for me to cotton on to the fact that these paramedics knew from very early on that there was probably not going to be a trip back to the hospital for Eva.

This panicky sense of getting things ready is a thick feeling when I remember it. I couldn’t stand still. I couldn’t watch them working on Eva.I stood for a moment watching through the stain glass window that separated the lounge from the kitchen. I could see her small body surrounded by people. But it was blurry and unclear through the mottled glass. I looked away. I kept fretting and moving. I had to be doing something. Getting prepared. And it wasn’t as if this was our first emergency. I didn’t think that was how that night would end.

When they finally told us her heart wasn’t beating, and hadn’t been beating for quite some time I collapsed in the kitchen. I sat on the lino floor and cried. I could hear myself repeating, “oh God” over and over. One of the paramedics told us the gasps we heard Eva make were “death gasps” which I thought seemed like bad wording, and I told them so.

The only comfort that statement allowed was in alleviating some of my worry that I could have done more to help her. That I could have reacted quicker. That that pause while Eva’s gasping slowed could have been prevented if I had recognised the situation faster and acted sooner.

Finally they finished on Eva and I was allowed to pick her up and cuddle her. It was over.

In quiet moments this night plays out like a movie in my head. Except I’m watching me go through the motions, knowing how the movie ends. Knowing I could have kept my pyjamas on. I didn’t need to race around and find my sneakers. We weren’t going anywhere. Her bag wasn’t going to need nappies or formula. I could stop fussing.

It has been three weeks since Eva died. A lot of life is moving on. I don’t begrudge it that. I don’t want people to wallow. I don’t want people to treat me like a fragile piece of crockery for months and months. But sometimes it does feel strange that I am stuck momentarily in this night, while the rest of the world moves on.

Eva, after all, will never grow up. So while I know the world keeps turning,and that it should for others and will in time for me too, there’s something not necessarily comforting but necessary about spending time in that night. Remembering it. Walking myself through it. Even if it hurts to do so.

In time I hope to leave that night behind and instead just remember all that Eva was. But it has only been three weeks, so that night is where I am right now. image

She was worthy of my rage

I’m tired.

I feel like Eva and I had built up so much momentum. We were in a routine. We were a well oiled machine. I was on top of her appointments and surgeries. I had relief days organised for doctor’s visits and I had got packing her nappy bag down to a fine art. Her day care was going so well. We were a team.

Now, the whole world feels different.

The mail I get isn’t doctor’s appointment reminders or child disability allowance updates, but condolence letters.

The nappy bag has been replaced with a handbag.

My calendar sits empty except for prior appointments for Eva I haven’t had the heart to delete.

Her room is spotless instead of looking like a bombsite for baby clothes.

Eva has been gone almost two weeks and as I return to some kind of normality and reality, it seems the world has been tugged out from under my feet.

We were sorted. We had things under control. And now, instead of feeling free with all this time on my hands and space to breath, I feel claustrophobic. Surrounded by her absence. Weekends stretch out in front of me aimlessly. I might have yearned for that before but now it feels like a prison sentence.

And although I’m getting more sleep and doing less, rushing less, carrying less, I feel exhausted. I feel the weight of Eva’s absence slowing my steps and tiring me out far more than all the appointments and therapy combined. It was hard to get used to it initially but we had done it.

The weeks and months to come were going to provide more challenges but we were ready for them.

Now I am a deflated balloon. I had purpose and reason and direction. Now I’ve had the air sucked out of me.

The only part of me that doesn’t feel tired is the part that is furious. Anger is one of the stages of grief, right? Well I’m feeling it. After everything, EVERYTHING, Eva and I went through it seems like some kind of sick cosmic joke that now she’s gone.

We overcame so much but instead of having a break, working our way through our summer of surgeries, having the excitement of cochlear implants, I am here alone without her.

People have continually told me I am strong. Well bear with me, because I don’t want to be strong right now, I feel angry and pretty damn sorry for myself. I feel jilted and jinxed and just a little bit bitter. I miss my daughter. And it feels so unfair.

I don’t feel like enjoying the little things or relishing the day to day just now, because what I feel like doing right now  is hitting something and swearing loudly into the wind. I was enjoying those little things, the moment to moment, because those moments were bracketed with Eva’s smiles. Her laughs. Her cuddles. And now my moments feel long, and grey and heavy and Eva-less.

I don’t take back what I’ve said. I want to get back to that place where I appreciate everything, where I find joy in the smallest things. But I’m not going to beat myself up for this anger. I’m going to allow myself this anger and hurt, because Eva deserves people to be angry over her. She was worthy of my rage and my hurt. She was worth taking some of those moments to grieve. She was worth a lot more than she got.

Sanctuary

People always feel like words aren’t enough in a time of grief. Words won’t make it better, no. They won’t bring the person back, or patch the break, or seal the wound. But they do have power.

They can’t fix, but they can comfort. They can’t fix but they can make you see things differently.

As someone who reads and writes a lot I have been using my writing as a way to figure things out. A Fugee mama friend described the grieving process as like a kaleidoscope and she’s right. It’s constantly changing and shifting. You can never get your footing. So writing helps me to feel grounded. My words may change from day to day and reveal that shifting ground, but being able to put them on paper (or into a keyboard) helps.

Words feel concrete and reliable. But malleable enough to allow multiple meanings. Like the kaleidoscope of grief, if you look at words from a different angle, you’ll see something different, find new meaning.

While words cannot fix or mend all by themselves, hearing and reading words designed to comfort and mourn alongside me is comforting.

Another Fugee mama friend, who has an amazing gift for writing, wrote me this poem for Eva and myself. I cried when I read it, and have cried each time since. Something about it captures so perfectly the voice of Eva. It feels authentic and real and makes me feel close to her. It makes me feel still and sad and empty, but also so full of love for my little girl who lived in a world that “turns the other way”.

Thank you Amy Monticello for taking the time to pen this. People always seem to feel like words won’t be enough in a time like this. But I appreciate every one of these words. So thank you.

Sanctuary
By Amy Monticello

poem