The definition of bittersweet

Most of my posts are written in tears, or shortly thereafter. They often represent the extremes of emotion. I don’t write about the days where nothing happens. Where I teach and eat and sleep and exist. I write when compelled to, which is usually when the pain and hurt is bubbling out of me through my fingers and onto the screen.

This weekend just been though, I had a moment that was different and I wanted to share that too. I worry sometimes that my posts make people concerned for me. I haven’t pulled many punches when it comes to describing my grief. It is raw and real and it hurts. But I don’t want people to worry about me. I’m not a burning pile of pain all the time. It lifts me up and down like an ocean in a bitter southerly. But there are gaps between the troughs. I am ok most of the time.

And then sometimes, I’m better than ok.

I had one of those moments on Saturday. I was in Napier for a good friend’s wedding. I was a bridesmaid so had a full day of salon visits and make up and photos, but before all that started I got up early and went for a run. I’ve been running since Eva died. I bought a treadmill and had planned to run on it while she either rolled on the floor of our apartment or sat in her high chair. Now that she’s gone I need it even more and have been working my way back into running, slowly.

So I headed out into a beautiful autumn morning. The sun was shining. I put my earphones in and started my timer. At first my legs felt heavy. The road felt hard after the rubber of the conveyor belt on my treadmill. After a few minutes I hit a rhythm and stuck to it.

Then this song came on.

The sun was on my back and as the lyrics, “all I can picture is held hands coming apart” I felt my lungs implode with a sob from nowhere. I held myself together and kept running. I felt the concrete hard under my feet and I pushed off harder and sped up. I saw the balloons we released the day of Eva’s funeral in my mind and felt a weight lift off me for just a moment.

This sounds quaint, or trite or arrogant, I guess I’m not good at writing about the bubbles of brilliance in amongst the grief, but in that moment I felt free and strong and like I could do anything. Before Eva was born I think it’s fair to say I was suffering from fairly low self esteem. I didn’t rate my intelligence particularly. Or my skill as a writer. I didn’t see myself as anything special. I didn’t compare myself favourably to who I wanted to be. I deferred to too many people. I let too many people put me down. It’s not that I now feel like I’m something amazing, I just felt full of potential and strength. With each foot hitting the pavement I felt a sense of lightness and power and possibility.

And the beauty of it was that in that lightness Eva was still there, ever present, surrounding me. While I pictured those balloons floating away I didn’t see it as Eva leaving me. It felt like she was with me, nudging me on. Reminding me how much we went through together. Reminding me I got through it, and that’s no small feat. Reminding me to keep putting one foot forward and to keep going. Telling me she’s still there in my heart when I need her.

And heck, now I’m crying again. But in that moment, I was happy and I won’t forget that, even if that feeling is fleeting.

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A friend told me that she read that in grief all things are heightened, including joy. That was perfectly what I felt. As if Eva was smiling on me, as if Eva was in her pushchair on that run with me and instead of making me cry it made me smile with a sob contained in my chest. The true meaning of bitter sweet.

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One last paediatrician appointment

I have only been back to Eva’s hospital once since she died. I was dropping off her unused feeding tubes and I dashed in and out without pausing. I didn’t want to pay for parking. I was in the grounds for under 10 minutes and in the children’s outpatients for maybe 30 seconds. I didn’t get a chance to think or reflect or feel anything. I got back in my car and got on with my day.

Yesterday I went back to the hospital for one last meeting with Eva’s paediatrician. I was pleased to get the appointment call, because yes, I did have unanswered questions. As soon as I sat down in the waiting room I felt myself slip. I felt strange sitting there in a children’s waiting room with other parents and their kids. Toys scattered about the play area. Without Eva. I have visited that part of the hospital, and the hospital in general, so many times, but always with Eva in tow. Sometimes in the front pack. Sometimes in her push chair. And when I was feeling particularly strong, with her just in my arms. We knew the halls well. The shortcuts and through-fares. Where to park and how to escape quickly. We knew where to get a coffee, and where not to. Where we could go to feed Eva, and where to go when we just needed some time out and peace. When Eva was sick, she and I literally lived at the hospital for weeks at a time.

It was where she was born, and where I paced about in labour. I remember walking around the rose gardens with my mum and having to stop and brace myself with every contraction. Months later I walked that same rose garden with Eva in the pushchair when we were early for an appointment. Even before she was born I spent many days in that place, having the amnio and talking with obstetricians about terrifying possibilities.

So it felt strange to be there, without Eva. I felt very alone. Surrounded by her absence.

I hated the hospital. Hated our ties to it and how we couldn’t escape it. But now that I don’t have to go back there, sitting in the waiting room felt immensely sad. Eva and I, for better or worse, spent so much time there. The nurses knew her. The doctors knew her. The emergency staff knew her.

I realised quite quickly that my straight forward questions where going to be delivered in between gasping sobs as I sat in the waiting room. I felt that familiar tug at the back of my throat and tried to focus on at least getting in to the doctor’s office before I let the first tears fall.

The doctor had barely asked me how I was doing before I crumbled. I’m allowed to crumble. I’m expected to crumble. So I let myself.

Between sobs, I asked about her last MRI. The one I never got the results for. Her doctor told me a few things were different. Her absent corpus callosum was in fact a partial corpus callosum. She did have one, it was just smaller than normal. Her frontal lobe was essentially normal and the lack of folds that they had identified when she was first born now looked normal. The only other issues they could identify was the presence of grey matter in her brain in amongst the white matter. Her doctor explained this can lead to seizures, something I always feared for Eva, or it could mean nothing.

This news means nothing. So she did have a corpus callosum, it was just much smaller than normal. So her frontal lobe wasn’t abnormal. So she had grey matter where it shouldn’t be. It didn’t mean anything to Eva and by the time she died it meant very little to me. She was still her. She was going to achieve what she achieved, scans be damned. I remember a nurse saying to me when Eva was born, “she is her own person” and I didn’t get it. It felt hollow and meaningless, but I get it now. The scans, the diagnosis, the results, they might help to identify future health issues or areas to keep an eye on, but they mean nothing to the child. They are who they are, just like I am who I am without ever having an MRI to examine my brain. When Eva was born the results meant too much to me. I clung on to them. I dug my nails in. Acknowledging sayings like “she is her own person” felt naive and foolish and ignorant, as if I was turning my back on some elemental truth. That was until I got Eva home and got to know her and realised it was all some imperfect, imprecise joke. The doctors could tell me these results, but not what they meant. They knew little more than I did. But Eva, she didn’t mind. She was Eva, plain and simple. She never saw a scan of her brain or heard doctors worriedly talk about seizures. She just lived. The elemental truth was not hidden in some scan or blood result, it as sitting right in front of me. It was in Eva’s smile and laugh. In her cuddles. Her diagnosis didn’t matter. Her scans mattered even less.

After talking about the MRI we went through the preliminary results of the post mortem. There were things I didn’t know and some that I did. Eva’s lungs and blood results showed signs of an early pneumonia infection. She had a cold at the time, but it wasn’t anywhere near as bad as her previous illnesses. So hearing the word pneumonia  surprised me. In saying that, any illness can turn nasty quickly, so perhaps she was on the brink of something worse. Her trachea was inflamed, from the coughing I would guess. But aside from that there was no real cause of death. Nothing to pin it on.

This photo was taken around five hours before she died. I would never have guessed this happy baby had pneumonia in her lungs.

This photo was taken around five hours before she died. I would never have guessed this happy baby had pneumonia in her lungs.

Her doctor also explained that the right sided aortic arch coming from her heart, which was picked up in some of my very early ante-natal scans, had resulted in the aorta pushing on her eosophagus and potentially her trachea as well, although this wasn’t totally clear. This would have made her reflux worse and potentially have affected her breathing.

One side of her heart was inflamed, due to her ASD (hole in her heart) and she had some minor hypertension in her lungs. This I knew about from her cardiologist.

But the kicker, the thing that somehow cut through all of it was something new. Something that explained so much. Her trachea and tubes leading to her lungs were “floppy” instead of firm. Most people’s tracchea is firm, which means when they need to clear mucus, coughing results in the mucus shifting. The walls of Eva’s trachea could be squeezed together meaning when she coughed instead of clearing the mucus, they folded together, preventing her from breathing clearly and clearing her airway. It makes a lot of sense in terms of her noisy breathing and the way illness lingered with her longer than most babies. I seem to remember an ENT doctor mentioning it could be a possibility eons ago, but it was never diagnosed while she was alive.

It seems a pointless thing to get worked up about. Even if they had discovered it there is no way to fix it. As the child grows the tracchea strengthens and the problems caused by it are lessened. In some children, the doctor explained, they have to be on CPAP constantly because it forces the tracchea open with the pressure. Eva was on CPAP at the height of her sicknesses, but the idea of her being on it at all times broke my heart. I know there are CHARGE kids out there in this exact state.

Hearing this additional problem that Eva faced, unbeknownst to all her doctors and carers, made me feel like I was back in the chair when Eva was born hearing the worst of the news all over again. I felt devastated, as if Eva were still alive and having to live with this. I felt again how brutally unfair it is that Eva had so many ailments. So many challenges. Was it not enough that she was blind and deaf?

So many parents of special needs children say they would not change a thing about their child. When it comes to medical issues, like being able to breath without assistance, or eat without worry of aspiration, or being able to sleep without worry of apnea, I would challenge anyone to say they wouldn’t take that part of their child’s condition away. It seems so universally unfair that these children who already have physical delays and intellectual impairments should have to suffer with medical issues as well. I guess it makes sense in a physiological sense. If something happened chromosomally to make Eva the way she was, why wouldn’t it affect the normal functioning of other parts of her body. But at a certain point it just makes you want to yell, “enough!”

I recently heard from another mother of a deaf blind baby. Her son has multiple other issues and has just recently had an MRI which reveals he has a brain tumour. When she emailed me with the details of her son’s issues I felt like hitting something. I mean, what the fuck? Where is justice in that? For her, for her family, for her son?

But again, I say this as someone who knows there isn’t some cosmic scales in the sky. Luck is not existent. You don’t use up your good luck or your bad. Bad things can happen to people who already have more than enough to deal with. But it’s such a hard impulse to switch off, the idea that surely, surely I have had enough bad luck, that Eva, this woman’s son, have had enough bad luck. That surely we will all be in for a lucky break. It’s a beautiful delusion.

Eva’s doctor posited that perhaps a combination of factors had contributed to Eva’s death. If she had built up mucus in her nose and throat and tried to clear it, perhaps her tracchea had collapsed and when she couldn’t breath for a short moment her heart slowed down and just never picked back up again.

She told me there was nothing we could have done. I know this. Intellectually, I understand this. But it does sting to know there was an underlying health issue that I wasn’t even aware of that could have contributed to her death.

I walked out of the hospital yesterday not knowing when I’ll ever go back there. I’ve moved areas since Eva died and now if I were to get sick I would go to a different hospital. If I were to have a baby I would deliver in a different hospital. It’s a fact that is both liberating and tragic. I don’t want to leave Eva’s life behind, but I also want to move forward.

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Quality of life – a crowd sourcing question

I have been reading Emily Rapp’s book, The Still Point of the Turning World. It is amazing. Breathtaking. Thoughtful. Beautifully written. Raw.

The section I just finished was around some of the challenging medical questions they had to answer with their son. She addresses the difference between “value” and “quality” when considering life. It got me thinking and quickly I realised it’s something I want to write about more. I’d like my essay in the collection I’m putting together to be on this issue and how my definitions for “quality of life” have changed since Eva was born. Were forced to change.

I don’t want this essay to just be my thoughts. I want to do some research. So, I’m crowdsourcing and looking for advice and direction. Have you read anything interesting on the issue of quality of life, or know of an author who has addressed it well?

A force of nature

Yesterday was a hard day. After a lovely brunch with my sister I came home and felt the two weeks of holidays without much to keep my mind busy piling up on me. I know I shouldn’t complain, and I’m not. I love the holidays that come with being a teacher.

But the lack of routine, the idle hands, the time alone; it had all built up over two weeks. The result was me, sitting alone in my apartment looking at photos of Eva on the day she died and after she died and sobbing.

When the grief seizes me like that it feels like exquisite torture. It hurts. My god, it hurts. But I don’t want it to end, because while I’m hurting, all I am thinking about is Eva. She fills my stomach and heart and head. It’s that feeling when you sit down in the shower and let the water wash over you. It hits you and you soak in it. It gets in your eyes and stings, but the drumming on your skull is therapeautic.

Today is a new day. School is back and I felt myself smiling and talking. A bit of routine and normality changing my chemical make up.

After school I drove to the courier post office and picked up my airline tickets to America at the end of the year. On December 5th I fly from Wellington to Minnesota and begin my great American trip. Holding the tickets in my hands felt exciting. Something to look forward to.

I got in my car, clutching my tickets and drove to my sign language class.

The class was good. People were less nervous. We had all been practicing. We could laugh more easily and enjoy the process without worrying how we looked. We had made progress.

There was a new couple there. With a baby. I had watched them pacing about before the class, the baby asleep in their arms. Just before the class started they put her down in a portable crib. Since Eva was born I can never take my eye off babies in my vicinity. I never used to be baby crazy, but now I want to see them and hear all about them.

At half time I approached her mother and asked about her. She told me her daughter was deaf. I hesitated and then said, “my daughter was deaf blind”. She looked at me and I waited for her to pick up on the “was”. She surprised me instead by saying, “I know. I read your blog”. She told me she saw it in the Longest Shortest Time facebook group and then realised I was in Wellington too. She said when she saw the blog she wanted to meet me and Eva. I smiled, thinking about it. We both would have liked that.

It was such a nice moment, and while we had to hurry back into the class and put away our speaking voices, I felt the little pieces of today fill me up and buoy me. I drove home smiling.

Grief is exhausting. It batters me and buffets me. It feels like there are so many metaphors to describe it because it is so universal and so complete. It’s overwhelms and submerges us. Every time I reach for description, for definition, I come back to water. The cup of grief, the waves, the storm, the shower hitting me on the head. It’s nature at it’s most elemental. Just as death is. Just as Eva was. A force of nature.

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The next time my cup is overflowing, or I’m in the trough between waves, or in the eye of the storm, or I’m sitting on the floor of the shower because standing up is too hard, I’ll try to remember days like today. When there are things to look forward to, and laughter, and new friends with unexpected things in common. It’s not the eye of the storm, but I can see light through the clouds.

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She’s in the stars

Sometimes I can go days without crying. I will be busy and my brain occupied and while Eva is always there in my head, it doesn’t bring me to tears.

And other days, I look at a photo of her and can’t quite believe her radiant little presence isn’t here anymore. A friend recently gave me a voucher to get some pictures printed on canvas. I selected four of Eva. Four of my favourites. They arrived the other day and are now sitting in my lounge, leaning up against the wall while they wait to be hung. They are A4 size prints and at that size the Eva in the photo is about live sized. They are beautiful shots which really capture her essence. Loving. Curious. Happy. Content. And I sit on the couch and watch them across the room, wondering painfully how such a bright little light could have been put out.

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When they arrived I sat in front of them and stroked the head of the contemplative Eva in the bath. I did a swirl on her forehead and I cried. I resisted the temptation to pick up the canvas and hug it. It is just a picture of her. How could this girl, who had so much to give and brought so much life and love to the people around her, not be here anymore? Sometimes the unfairness of her death just crushes me. I feel wrapped up in it and suffocated by it.

I can go days without crying. But then I feel her death like a punch in the guts as if it happened today. It has been almost two months since she died. Her death feels alien to me now. That night. It feels very long ago. But her life feels so close by. So ever present. As if I could close my eyes and imagine her back.

When I go to bed at night I imagine her asleep in the room next to mine. Behind my eyelids I see her lying on her side in some strange position in her cot that she has wriggled herself into. Her face a mask of serenity. I imagine her lying in the bed with me, when she wakes at an hour I don’t think is really morning. her little hands exploring her surroundings and touching my face.

As a non religious person, death feels like a black hole to me. Eva left this earth and can’t come back. But I don’t know, and can’t know, whether she’s just on the other side of the black hole, or if that’s it. She’s gone.

When I see the photos of her I can’t quite believe such a presence can just disappear. I don’t want to believe she’s just gone.

I went to pick up some of Eva’s things that her day care provider still had the other day. One of Eva’s little besties had woken up from his nap by the time I left and, with a little prompting from his carer, told me he says goodnight to Eva in the stars each night. That that’s where she is. She’s in the stars. I smiled as tears flooded down my cheeks and thanked him for the lovely thought. I wish I had the innocent conviction to know that in my heart as he does.

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A collective railing against the world – a collection of essays

When Eva was born and doctors started to deliver the hard news to me about my daughter, I wanted someone to rail against. I’m not religious, so I couldn’t rail against god. I couldn’t blame the doctors, although it felt very tempting at the time.

I got angry when people told me about the “respite care” I’d receive as the parent of a special needs child. I got angry because it felt like they were saying, “your life will be so unbearably hard that you will need to escape it, on a regular basis”. It felt like an ambulance at the bottom of a cliff. Not enough.

Here were these hospital social workers, the people who should know which services would be available to me and all they could promise me was the occasional trip to the movies to try and unwind myself for two hours from the tightly wound life of a special needs mum.

I was angry and heartsick and I wanted to hear from someone who would tell me the honest truth about it. The social workers kept telling me they would connect me with parents of special kids, but my Eva felt so far beyond that. She felt more special than anything they had come across. With more issues. More medical troubles. I didn’t feel like talking to those parents would help. It felt like it was irrelevant to me. It wouldn’t scratch the surface of what I wanted to know and hear. I wanted to hear from parents who had thought they couldn’t do it. Parents who had considered adoption and running away. Parents who could tell me what I was feeling was not only normal, but that I might look back and feel very different.

I imagined the parents they would have me meet being saints and good doers. People who took on the hard toil of special needs parenting without a question or a backward glance. I imagined them telling me about the good things and ignoring the hard. I imagined the bile rising in my throat as I thought, YOU HAVE NOTHING IN COMMON WITH ME.

Grief separates us. It makes solipsists of us all. My grief at accepting Eva as who she was meant I felt like I had it worse than everyone. I felt alone and isolated and doomed.

I didn’t want to talk to people, but I would have read about them. I would have read stories about mothers who had felt as I had felt. I would have loved to have heard from parents who struggled with the adjustment; parents who didn’t take to the change in expectations and future plans like a duck to water, but instead felt they were drowning.

I wouldn’t mind if some of these mothers told me it got better, or that they didn’t feel that way anymore, but I needed to hear the grim, solipsistic grief was not just mine alone. I needed to hear I wasn’t a monster for feeling this way.

I needed to know that society had built me this way, but that didn’t mean I couldn’t change. That didn’t mean I wouldn’t struggle and find this hard, but that this difficult part was a stage I had to go through. I wanted to hear my voice as part of a collective railing against the universe, rather than a sole wail of grief.

So now, I look around at some of the writers I surround myself with on the blogosphere and think, I wish I could have found you then. I follow some of the bravest and strongest parents in the world. They share their journey with humility, honesty and humour. They let the world into their lives and I am better for reading it.

So this gave me an idea. What if there had been a collection of stories from parents in all stages of parenting special kids? Would I have read it? Yes. Would it have helped? I’d like to think so.

I am working on getting a group of writers together to produce a collection of essays on special needs parenting. I want a variety of syndromes and conditions represented, and a diversity of experience for both the children and parents. I want to produce a collection which shows both the brutal and beautiful in this kind of parenting. I want this to be a book that will provide comfort and solidarity to other new parents, but will also be educational and illuminating to people who have no experience of this kind of life.

I had no idea what this life looked like before Eva was born. I had misguided and distorted images in my head, based around what society told me was valuable and worthwhile in life. This distorted view of what my life would be like with a special kid was paralyzing and terrifying. If I could have heard the reality, the bad and the good, I’d like to think I would have felt less alone and clearer about what my future might look like. I’d like to think I would have felt calmer and more ready to accept this new normal a little faster.

Parenting a special baby and child has myriad challenges to be overcome. Parenting in general has a whole set of its own challenges. They just look a little different and there are a lot of places you can go to find answers when you come across these “normal” problems. As a special parent it feels isolating that the “normal” parenting challenges either don’t apply to you, or are inconsequential next to the bigger medical or development issues you are facing.

If I could have found a place that addressed some of these special challenges from people who weren’t afraid to tell me the truth, it might have normalised the challenges for me and maybe I would have felt like parenting Eva would not be so different to parenting in general. I would still know it was going to be hard, but the veil of mystery would be lifted to reveal the reality.

I’m not trying to excuse myself or my action. I’m not trying to claim that if only there had been a book of essay I might have made different choices. I’m just saying it’s something I think should exist and I want to make it happen. I want to allow new parents of babies like Eva to hear what it can be like. The beautiful moments and the devastating moments. I want them to know whatever they are feeling, however heartbroken or confused or scared, someone else has felt that way, and it’s ok.

I have four fantastic writers (including myself) on board at the moment. If you are reading thing and feel like you have something you could add to the project, comment on this post with your interest and I’ll be in touch.

Learning one of New Zealand’s three official languages

At 5.35pm tonight I was in my pyjamas, halfway through a Corona beer and just starting yet another episode of Buffy for the day. I was congratulating myself on getting so much done today including going for a run, catching up with an old friend, dropping of a bridesmaid’s dress for refitting for a wedding next month, getting keys cut for the apartment. I felt very productive.

Then my phone bleeped. I looked down and it reminded me I had my first NZ Sign Language Class in 10 minutes. On the other side of downtown.

I hate being late to things. I am one of the most punctual people I know. If I had remembered it was Monday I would have been one of the first people at the class. Probably at least 15 minutes early to allow myself time to find the room and find a park.

As it was I pulled on the first pants I saw in my very chaotic room and rushed out the door. Every red light I cursed and pictured walking into the class late, unable to explain myself because it was a sign language class and we weren’t supposed to talk.

I thought about my students when they are late. I’m actually probably too accommodating for lateness in my own class, and hoped my teacher today wouldn’t choose to embarrass me too much.

The class was in the university wing of the train station. I had never been there before and ran around a little panicked until I found it and rushed to the third floor where the meeting room was.

I must have looked so flustered when I walked in, just 15 minutes late, that the teacher took pity on me and signed what I assumed was, “you got lost?” To which I nodded, blushed profusely, and apologized silently.

Once I was sitting the class got back into action. No one spoke and the teacher communicated everything he wanted to tell us through gesture, sign language, facial expression and finally, if we were lookiing at him with question marks all over our faces, he would write on the board.

Initially I found it restricting not to be able to talk, but I soon found it refreshing and a relief. I didn’t have to talk. I’m not a big talker, particularly with new people. And here I was with a group of people I didn’t know, and I wasn’t allowed to talk.

In the five minute break a few of us gathered in the area outside the room and chatted. One woman started asking why people were learning sign language, and as another man answered I tried to compose an answer in my head that wouldn’t completely mortify the woman asking. How do I tell you it’s because my baby daughter, who very recently died unexpectedly, was deafblind, so I want to learn it, without making the conversation ground to a halt and become all about me?

Thankfully the teacher came out and beckoned us back in the room before she got to me. I hadn’t figured out my response.

During the class we learnt the alphabet; how to ask someone’s name and introduce ourselves; how to say nice to meet you and thank you; how to count to ten; how to say where, what and who; and how to say same, different and class finished. I drove home and practiced the alphabet at the traffic lights.

I got home and stood in front of the mirror and introduced myself to my reflection. My name is T-E-S-S-A. What’s your name? I furrowed my brow as I asked “what” and smiled as I told myself “nice to meet you”.

It felt really good to be the student, instead of the teacher. A bit daunting, but exciting. I wished I could practice the signs on Eva but I’ll learn it for her, nonetheless.

Next week when school gets back I’m going to teach my classes a few of the signs and get us using them as much as possible. It’ll help me remember and learn them and they can learn a bit too. It is, afterall, one of New Zealand’s three official languages.

The end of an era

Today marked the end of an era.

I moved out of Ess and Jay’s house and into an apartment by myself.

I said goodbye to the home and household that has provided immeasureable support to me and Eva over the last year.

Ess and Jay are private people. Humble people. Good people (and that’s a bit of an understatement). They don’t like it when I thank them or draw attention to them or make a big deal. So I’m just going to do this just once. I hope everyone has friends like these. Friends who step up as if they were family and help when you so desperately need it.

Ess and Jay’s support helped me to take Eva back. They offered me a home to take her into and a family to belong to. They told me before they even knew my decision or thought process that if I wanted to bring up Eva, to be her mother, that I could live with them until I felt confident to live with just the two of us.

This sounds like a small thing.

It is not.

They have a 16month old son and a mortgage and are newly married. They were giving up their three person unit and family space to help Eva and I get on our feet. They don’t think this is a big deal. But it is. It was a huge deal to me. It meant the difference between me and Eva being able to be together straight away to me struggling with the whats and hows for months on end.

At the time I had no fixed abode. No income. I was depressed. I couldn’t see a way out of the situation I was in. I felt stuck and desperate. I couldn’t see more than 5 inches in front of my face because I couldn’t picture what my life would look like. I had no frame of reference because I hadn’t imagined i’d be doing this by myself. I hadn’t pictured raising a baby out of my home, with no job, and no idea of what came next.

Jay and Ess offered me a home which gave shape to my planning. It gave me stability and security and comfort so I could take on something I didn’t think I was capable of; parenting Eva by myself with all her extra needs. It gave me support a. nd structure. They gave us a family to belong to.

I will be forever grateful to them, and they know this. I will miss my early mornings with Jay and his son – sharing a coffee and an understanding and tired smile at 6am. I will miss Ess and my long talks and the way she talked to Eva as if she was the most important baby she had ever met.

I will miss being a part of that family. I’ll still see them of course. Of that I am sure. But I will never forget the time I got to spend as part of their family. And how much it meant to me and to Eva and to us as a unit.

Thank you, Ess and Jay. You are amazing people who mean more than anything to me.

So today, I moved out.

After almost a year on and off with their family, I packed my car with the last of my things and I drove into the city to set up in the apartment.

It feels big, and scary, and exciting, and sad. I’ve never lived by myself.

It was supposed to be the two of us. Braving the big wide world together. We were a unit. I looked at my watch at 5.10pm and thought about what I would be doing if Eva was still here. We’d be getting reading for her bath. Her pyjamas would be laid out and I’d be getting ready to feed her one last time before I put her to bed in her new room. We’d be dodging boxes to let her roll around the lounge and her cot would be set up, ready and waiting for her, while my bedroom would be chaos.

Instead, I was looking at boxes that needed unpacking. I was looking at Eva’s clothes, knowing they didn’t need to be unpacked. My bed was made, and the room that was supposed to be hers had boxes and bags and folded down pushchairs and car seats filling it.

Now, I’m listening to the rain and thinking about sleep. I know I’ll get lonely. I can feel that niggling in my chest and head, that aching for company. But I felt it already, and this time it cannot be filled. Because there’s a part of me that will forever be missing certain company. Missing Eva. So I would rather be by myself right now than try to fill that gap with other things.

I’ll sleep. And tomorrow I’ll get up and unpack and few more boxes. I’ll put up photos of Eva, and I’ll cry, but I’ll also know she is here with me in this space. I’ve set aside room for her and she is here.

And when I need to remember her out loud, Ess and Jay and their son are a short drive away. We can remember her together.

Birds and butterflies for Eva

Today my parents and I let 12 monarch butterflies fly in Eva’s name to celebrate her birthday. We watched them blink into the open light when we took the lid off the box. We watched them flap their wings and get ready, look around at the world and then take off into the light rain.

They let us take them on our fingers to explore the world for a while before they flew away.

We rescued one from the bushes when the rain got heavier and instead of going back in the box it flew right next to my ear and landed on my hair. It sat there, tickling my cheek for minutes before finally taking off again. A small feathery kiss from Eva.

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Since Eva was born I have noticed nature in a way I haven’t before. I have noticed things I never saw before and felt awed by things biology and evolution have created and shaped.

When I was in Hawaii with my big sister it was the birds that got me. Everywhere we looked were birds. Roosters waking us up at all hours. Sea birds that swooped and dove. Forrest birds that sang and fluttered.

There were two birds in particular that stood out.

The first was the Hawaiian Cardinal. It’s red face and chest seemed like a glimmer of hope to me. I was in the midst of a difficult decision, the decision over whether I was fit to be Eva’s mother, her caregiver. The Cardinal stood out and seemed to say, you can. You are. You are enough.

The other bird was the Iwa bird (pronounced Eva). On our 17 mile kayak one of guides talked about them and said you shouldn’t point at them unless you want to bring in a storm. They are a sea bird, a frigate bird, but they unlike other sea birds they have no oil on their feathers. Like my Eva, they inhabit a world that is not built for them. But they don’t care they get around it by letting other birds dive for fish and waiting for them to surface before scaring them and stealing their fish.

Some might say scavenger. I say resourceful. Clever. A master of adaptation. Just like Eva.

When I got home these birds didn’t leave my head. Eva came back to live with me permanently and these birds stayed in my head as little beacons of hope and encouragement. I thought of the cardinal when I felt low. Its boldness and alertness gave me strength.

I thought of the Iwa bird when doctor’s appointments drained me of positivity. I thought of their cunning, their determination to survive when Eva was sick over that winter.

I started to plan for how to keep those birds with me. I got two tattooists and a friend who is an illustrator to design me two tattoos. One for my arm, the cardinal, to remind me to be strong and trust myself. It sits on my left forearm and reminds me what I have got through and who I am.

The Iwa birds were for my back. They were soaring across a blue sky. They were for Eva. They would be a piece of art that would remind me of how lucky I was to have this amazing, beautiful, determined and masterful girl as my daughter. The birds reminded me how close I came to losing her. They reminded me that I was the mother to an amazing, clever girl who would teach me about life. They were for her.

Eva had changed me. I wanted that change to be reflected physically. I wanted to see that change when I looked in the mirror.

I know tattoos aren’t for everyone. I already had one small one before Eva was in my life, but this experience has changed me, and the need to mark that change was undeniable.

When I look at my arm I see pain and hope and experience. I see myself.

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Photo courtesy of Nursey No Mercy tattoos.

When I see my back in the mirror I see Eva, soaring above me. I see light and love and her indomitable spirit.

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Still waiting on the blue for the sky.

Even without these marks on my skin I know Eva will never be far from my thoughts. But with these marks I feel like I’m carrying a visible reminder of her life. A visible reminder I am Eva’s mother.