This city feels different

I’m in Auckland visiting friends. I used to live here, what feels like a lifetime ago, and I still have quite a few friends who live here. One of these very good friends decided to fly me up to spend some of the school holidays with her and her family. This friend is one of those special people who you just want to keep in your life. She came to Wellington for Eva’s funeral and stayed with me, doing little things to make things run smoothly. She goes out of her way to make things just a bit easier for me. She’s kind of the best.

The last time I was here was with Eva at Starship hospital. The night before she was due to come and live with me I got a call at 1am from her foster mum. Eva had been having trouble breathing and she had rushed her to the emergency department. Eva and I spent the next two weeks in Starship. It wasn’t the home coming I had envisioned, but I had been so grateful to be with her at that time. This same friend had picked me up and taken me to her home and fed me, dropping me back off at the hospital a little revived after long days sitting by Eva’s bed.

Being back in Auckland again, staying with my friend, but without Eva feels strange. It’s not the same city that I used to live in as a twenty-something. It feels different because I’m different and because now, having seen what I’ve seen, and knowing about all those sick kids and their families in another world at Starship and Ronald McDonald, I can’t feel the same about this city. I’m not oblivious anymore and I don’t want to be.

Now that Eva is gone it strikes me as so amazing that when I was here last I was so sure she would be ok. We were flown by emergency jet to the Paediatric ICU in the hospital where the sickest kids get sent to, and still I was so confident Eva would be fine. I was scared, sure, but I knew she was in the best hands. Even when she was intubated and the machines were breathing for her, I didn’t see any other end to that visit than me and Eva coming home together. It seems crazily optimistic now. Naive. Foolish even. But I just didn’t see it going any other way.

It came as a big shock, then, when the paediatrician pulled me aside just when Eva was starting to get better and told me what our future could look like. He explained that babies like Eva who get in this kind of breathing distress often spend increasing amounts of time at Starship and being intubated. He said while it might not happen, I should be prepared for that. For my winters to be spent at her bedside and for her to be sick. A lot. For sickness at this level to reduce her quality of life dramatically. For her development to stall. For her lungs to develop lung disease due to the repeated infections.

He explained that if this became the case, over and over, that I would need to think about whether they continued this level of intervention. He said at a certain point I would need to weigh up Eva’s quality of life with the interventions they had to make in order to keep her alive. I would have to decide if we continued down this path, over and over again, or if I made a choice to stop us.

I am so thankful I never had to make that decision.

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When Eva was in the NICU as an infant I had written to the hospital, with my family’s help, so they knew they weren’t to undertake any major procedures or life saving measures without consulting me. It felt like I had lost control over the process. I wasn’t staying at the hospital, and I went home each night, leaving her there. It was as if Eva was not my baby, but the hospital’s. I wanted to ensure that they took my voice into consideration. That they didn’t just prolong her life for the sake of it, if that was what it came to, or did anything drastic without talking to me first. That decisions could be made by me if they needed to be rather than having to deal with those actions in the aftermath. That Eva’s life was not seen as a heart monitor and oxygen saturation levels on a machine, but as a whole and complete entity that was multifaceted. It was not enough just to keep her alive, her life needed to be considered from all angles.

I am so thankful those decisions did not need to be made.

But I like to think I would have been strong enough to put Eva’s quality of life first. Before my emotional pain. Before the gut wrenching urge to do everything it took to save her.

When Eva was being resuscitated the night she died, they came and told me her heart had not been beating for 20 minutes. I panicked. I knew what that could mean for her. For her brain. For her life. I looked around desperately and tried to tell the paramedics about what this doctor had said to me at Starship. How they had said, even then, when she was getting better, that it might not be in her best interests to do everything they could to bring her back. To give her breath.

I so desperately wanted her to be ok. But bigger than that, I didn’t want them to bring back my daughter if she had not been breathing for 20 minutes. If her heart had not been beating for 20 minutes. The baby they brought back might not even be my Eva. I was fighting a battle in my head between doing everything necessary and knowing when enough should be enough. I wanted to save her of course, but not if saving her meant making her life worse. Bad. Not worth living. But where you draw the line on that is always going to be contentious. Who am I to decide? Well I’m her mother. If I can’t make an impact on that decision, no one can.

But, again, I didn’t have to make that decision. And for that I am thankful.

The paramedics had their protocols, and 10 minutes later they gave up of their own accord. I never had to decide what was more important, her being alive, or the quality of that life.

I will be forever thankful I didn’t have to make these decisions. I am also happy that her quality of life for most of those 10 short months was very high. Aside from that main hospital stay, and one other less drastic stay, I kept her out of the children’s ward fairly successfully. She got to be a baby in her home with her family, both biological and otherwise, without major interventions every day. Anyone who met Eva could attest to the quality of life she had, which was amazing.

I think about this now, because I’m in the city where I was told I might have to make those decisions. At the time I said I wouldn’t blog about it. It felt like a self fulfilling prophecy. I didn’t want to write it, for fear I would make it come true. So I didn’t. But I’m saying it now, because I know in this city, right now, and in cities all over the world, there are parents having to worry about their children. And driving through this city, seeing that hospital in the distance, I feel myself back in my body looking over Eva’s bed. I feel tears rolling down my face after the doctor had his talk to me. I feel the nurse looking on, concerned, and shutting the curtain for me so I could have some privacy with my girl.

And it still feels very real. Very raw. So in this city, tonight, I’m sending a virtual hug to every parent looking on over their sick kid, wishing they could take that pain away. Hoping for them that they never have to make that decision, and that their babies get better. It feels overly optimistic now, but sometimes it’s easier to push ahead with optimism until you cannot ignore the reality any longer.

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Coming home

I’m visiting my parents this weekend. My sister and her partner are here too, with their puppy along for the ride.

I love coming home. I love living within a couple of hours so I can pop home for a weekend without it being a huge mission. I loved coming here with Eva too. I got to have afternoon naps while she had cuddles with her Papa and Granny. I got to show off Eva’s latest milestones to an audience of watchers who knew what a big deal each and every one was.

Eva and I would get up early (at Eva’s insistence) and spend our morning together in the lounge. When she was very litte she would lie on my lap while I stroked her forehead with one hand and typed blog posts with the other. When she got a bit bigger and found her rolling skills, I kept an eye on her and shifted her every few minutes when she found her way to the linoleum.

She got taken on long walks in the pushchair with my parents’ dog and had lots of snuggles on the couch. She had multiple laps on which to lounge and a new dog to grab at.

When I come home now I can’t help but feel her absence in a very physical way. I sleep in the room that she slept in and in my minds eye I see myself putting her down in her porta-cot, sometimes already asleep and peaceful, other times wriggling and not ready for bed. I see myself walking in in the morning and finding her in all sorts of positions, and stilling for a moment before wriggling with glee at the realisation that it was morning.

I see her rolling on my parents carpet and see those quiet hours with just the two of us, before any one else was up.

And I see the drives there and back. Me keeping an eye on her in her mirror. Her, rarely sleeping, playing with the toy her daycare provider gave her and sucking on her dummy. I see her getting restless and me reaching back to stroke her head. In the last month she was alive she had taken to reaching up to grab my hand and hold it there. She knew what she liked.

I’m not describing being haunted by Eva. I’m describing a place where I feel her presence strongly. My own home has changed multiple times since before she was born, but Eva’s grandparents’ home stayed the same. So now when I come home to see them, she is there too.

She was my parents’ first and only grandchild. When I talk about feeling like I’m not a mother sometimes, I forget that same feeling must be happening within them too. They are still Eva’s grandparents, just as I am still her mother. It rips me up inside that I have to type that and convince myself.

Eva enjoying her Christmas haul at my parents' house last Christmas.

Eva enjoying her Christmas haul at my parents’ house last Christmas.

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World’s Okayest Mom

Oneinamillion:

The daily reality of special needs parenting, expressed here so well.

Originally posted on Star In Her Eye:

Tonight, about an hour after I told my husband all the reasons I felt like a shitty mother, I checked Facebook and saw that a friend of mine posted a photo of himself wearing a T-shirt that said, “World’s Okayest Dad.” I laughed. Something about it broke my tension: being proud of one’s mediocrity, singing the praises of one’s absolute okayness. Okay, as in average, but okay also as in just fine. I need one of those shirts. “World’s Okayest Mom.” I feel like that’s about the highest accolades I deserve lately anyway.

This morning, Fiona’s two-year-old sister was shoveling yogurt into her mouth, so Fiona wanted to shovel yogurt into her mouth. (“Yogurt. Want,” she said on her talker.) I cringed. We were running late. To help Fiona feed herself yogurt, I need to hunch over her highchair, hold her hand, which is holding a spoon, help her dip…

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Surrounded by voices who understood

I dreamt about Eva last night.

In my dream they had brought her back 24 hours after she died. Somehow when they got her back to the hospital they realised it was possible to start her heart again. They’d kept this quiet from me for months and she had been in foster care, but now they were telling me.

In my dream I was feeling so many things. Rage that they had brought back my girl after 24 hours of brain inactivtiy; love and relief at getting to hold my little girl again; grief at realising her problems were now bigger, more challenging than they had been before.

I was told by people in my dream to leave her in foster care. To get on with my life.

In my dream I remember thinking clearly, it feels hard now, but remember how happy you were before with Eva. Think about how much you love this girl. In my dream my decisions were unwavering. I felt solid and unshakable.

It’s obvious what my subconscious is trying to work through. It was trying to have a do over. Trying to tell itself that when faced with something worse than what we had already faced I would be steady and solid and make the right choice straight off the bat. Trying to have a chance to reconcile myself with those missed months, that I told myself at the time were nothing in compared with a lifetime, but which turned out to be such a huge chunk of Eva’s life.

In my dream she had lost some of her dexterity. She couldn’t grasp like she used to. And her hair was longer. But she was Eva. She cuddled like Eva. She smiled like Eva.And when she pointed to my nose and I said “nose”, she mimicked me and repeated “nose” back to me.

Eva couldn’t talk. Or sit up unassisted. Or crawl. But when she was alive I often had dreams where she could do one of those things. In my dreams I always said to people, “see, I knew she could do it” as if I had always known she’d be fine.

Our subconscious’s have a way of jogging us. Jolting us. Mine was clearly telling me I have some things to work through. I can feel it in me. Twisting and turning. Snapping and biting. I have a lot of anger. Towards myself. Towards people who influenced my choices. And now that Eva’s gone I don’t have our future to focus on and sometimes I feel myself dwelling on the past. I feel like I need to blame someone, or something.

I know it’s useless. I know it doesn’t do me or anyone else any good. But there is still this hot resentment in my stomach that makes me want to lash out. Not at everyone. But lash out all the same.

I take a lot of that blame myself. I am my own person and if I had been stronger, and steadier I would have made my decisions without needing to hear it was the right thing. But I didn’t. And I know I will think of those two months with regret for the rest of my life.

I know the rational argument. I know that those two months meant that the rest of the time I had with Eva were happy and positive and we were a great team. I know that if I didn’t take that break I wouldn’t have got to that place. Eva would have died and I still might not have felt the level of acceptance and gratitude I did at the end.

I also know those two months helped me get my head together. I went on antidepressants. I saw a counsellor. I stopped crying for most of the day.

And finally I know that Eva was in the best possible care with her foster family who I now consider to be some of the best people I have ever known. I saw her more than once a week while she was with them and I never doubted she was being loved and taken care of. I still keep in touch with her foster parents. They treated me with so much compassion and love while Eva was with them and since she left them. I am grateful to know them.

So I know all these things. But it still doesn’t stop that irrational voice in my head that makes me dream of the chance to do it over. It still doesn’t stop me thinking about it when I’m tired. I doesn’t stop me from regretting so many small moments of Eva’s life.

The only thing I can do now is try to help other people who were in my shoes. Show them that feeling like you can’t do it is normal. It’s OK. You are not a monster. I was not a monster. I guess when I try to tell them, I’m trying to tell myself too. Because if other people feel it like I did, then I wasn’t wrong. I was one of many.

I want that earlier version of myself to know that those feelings i was having were normal but that I would feel better one day. I want to be able to slap myself and tell myself to calm down and do it, because I could be her mother. Because I was her mother.

So the book project continues. I can’t wait to read all of their essays about their own experiences. They are all so different than mine, but we all have something in common: our worlds were turned upside down. I hope reading it will help some parent some day and maybe they won’t feel so alone. Maybe they won’t have to look back and regret their decisions, because they made them surrounded by voices who understood.

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Without trying, or having to, or knowing it, she changed me

There are a lot of cliches, euphemisms and platitudes that get thrown around when something inexplicably tragic happens. People don’t know what to say, and they want to placate you with something. They mean well, usually, and they are desperately trying to find something to make it feel better. They also want to make sense of the event and sometimes make themselves feel better about it. If they can rationalise it or put a label on it, they’ll feel better it’s happening.

There’s the ones I’ve mentioned before, the:

“everything happens for a reason”, and the “God only gives you as much as you can handle”, and the “well at least…..”. You also get a few of the “every cloud has a silver lining”. Each of those is designed to calm and assuage you, but it always made me seeth. It wasn’t for me that they said “God only gives you what you can handle”, it was so they could feel better that crappy stuff happens to people.

When Eva was born, and since she has died, I have heard them all. When she was born I got a few of the “everything happens for a reason” which I internally scoffed at. The thing I got the most of was the cliches about being a special needs parent. I was told I would meet so many amazing people. I was told that I wouldn’t change Eva for the world. I was told that she would make me into a better person. A stronger person.

I hated hearing those things. I was angry and desperately sad and I didn’t want to be a better person. I didn’t feel like anyone special or capable or strong. And I didn’t want to be. I saw that – the idea of becoming someone better – as a conciliation prize in a fucked up situation. I had visions of mothers with nun-like temperaments who were undoubtedly better people than I was but who I didn’t want to be. I didn’t want that life. I thought I was happy with who I was already.

I wanted the life I had pictured. Not the one where through my miserable and desperate life I would become better and stronger.

I also didn’t want Eva to have to take on the roll of teacher. When people say how much your child will change you and how they wouldn’t change anything about their child I feel like spitting. Why should Eva be responsible for teaching the world about compassion?  Why should it be her job to teach her mother about how to live? She didn’t owe anyone anything, and being born with those kinds of challenges is not a gift. We can do the best we can with the challenges we face, but that doesn’t mean those challenges are fair, or good or something to be thankful for.

Eva was beautiful and taught me so much, but it was not her job to do that. And while I like the changes she made in me, I would change them back if it meant she could still be alive. I would change them back if I could have given her sight, or hearing, or a heart without a hole. I would change them back for her. She owed me nothing. But as her mother, I would have killed to have given her that.

But without trying, or having to, or knowing it, she did change me.

I was talking to a friend recently. She had read my last blog and I was admitting I had found the week hard. Some weeks feel that way. We talked about my feeling of wanting the world to stop and she told me she was impressed with how I mostly force myself to keep up with the world even if it’s not what I always want to do. And then she said something which should have been obvious to me, but somehow wasn’t. She said “the irony is, I think it’s Eva that has given you the strength to do that”.

She was right. Being Eva’s mother has changed me. I have no doubt that it has made me a better person. And I am certainly stronger. Having the wonderful girl in my life has given me the strength to get by without her. I could say I wish none of it had ever happened. I would be the person I was before Eva but also would never have to face this loss, but I don’t want to do that. When I looked at that “better person” everyone kept telling me about, I couldn’t see them properly. They were out of focus. But now I see part of being this better person is the realisation that you love that change in yourself because it comes from your fierce love for your child. People can misunderstand it as martyrdom or giving up, or they might look on in pity because we have no other choice, but it doesn’t feel that way on this side of the equation.

I don’t feel nun-like or wholly selfless. I don’t see myself that way and I never needed to. I thought when people talked about becoming stronger through being a special needs parent that I had to be something I’m not. I thought I had to be supernaturally giving and selfless and prepared to sacrifice it all.

I didn’t realise that parenthood in general requires those things. And that in the end I would do what most other parents would do, and that’s anything I could for my daughter. That doesn’t make me special or particularly different, it just makes me a mother.

But it’s undeniable that being Eva’s mother has changed me. That those placaters were right. I am stronger. I do feel different. Sometimes that difference hurts. Like when I go out with some friends to a gig and when I look around I feel like I can’t quite squeeze back into that life that I once had. I feel like I don’t belong there anymore. But most of the time, it makes me feel lit up from the inside. It makes me glow. On that same night, where I didn’t feel quite part of the scene, where I felt I was outside looking in, I also felt a level of comfort in my own skin that I never did before Eva. I felt a confidence in myself that is new to me. Eva taught me what it means to be alive and she made me see it’s my life to live. That I am the one behind the steering wheel. She taught me I am enough as I am. Just as she was. She taught me that I don’t need to please everyone, I don’t need to be friends with everyone. I can just be me. And that’s enough.

I wish she was living her own life alongside mine. I wish this new stronger me had not come at such a cost. I wish I could have been this women with Eva by my side. But I will be forever grateful that I got to have her in my life at all. That I got to be her mother for a brief time.

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This perfect Eva shaped hole

I have written quite a bit about triggers over the last few weeks. Things that set me off. Things that turn a seemingly normal day upside down. Things that leave me reeling.

But the truth about grief is those things aren’t necessary.

Today just felt hard.

Teaching felt hard.

Waking up felt hard.

Keeping a smile on my face when that was the last thing I was feeling, felt hard.

I snapped at students. I sat behind my desk too much. I put down a protective wall to the world for the day.

It wasn’t until the drive home that I even realised why. I got in the car. It’s always in the car that things hit me. And I just felt my shoulders collapse.

I miss my daughter. My daughter is gone. Everyone has missed someone before. Maybe they were away overseas, or moved cities. Maybe it was months before you knew you would see them. Or years even. I don’t need to explain that death feels different. It is so complete.

I sucked the day of feeling off and short tempered and angry into my lungs and what came out was emptiness. A hole where I miss Eva. I can’t patch it, or have a quick skype to alleviate this. This isn’t something that can be bridged with a plane ticket.

Missing someone like this is excruciating and relentless. It sneaks up on you, with or without something to trigger it. It doesn’t go away.

Eva would be 14 months this month. Tonight I caught myself looking at her photos on the wall and trying desperately to imagine what she would be doing right now if she was alive. What milestone she would have reached in the three months since she has been gone.

I would give anything to know. I would give anything to see that.

And this feeling won’t go away. As Eva’s contemporaries grow older,  I’ll always wonder what she would look like at that age. What she could do. Who she would be. I’ll always wonder what that giggle would have turned into. What other parts of her personality would come through as she got older. I already knew she was brave, and loving and demanding. I knew she liked to laugh, and play in water and suck on just about everything. But what else would she have been? At two? At five? There is never going to be a time when I don’t wonder that. No age that I won’t think about her and wish an image into my mind.

My days are ok. I’m not a wreck all the time. In fact i’m pretty good most of the time. But some days. Some days, like today, I want to scream and punch something. I want to shake some one in charge and tell them they made a mistake. I want to thrash about and put a dent in the world, to show it what it’s missing. I want to make some noise and cause a scene, because I never do that kind of thing. I want the world to stop and remember she is gone. I want to feel like this loss is bigger than the hole inside my chest. I want the world to stop turning for just a moment and recognise this perfect Eva shaped hole in the universe.

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Because I’m missing seeing what she would have been. Who she could have been. I’ll never know and it feels so unfair. I want the world to realise that and miss her just as much as I do.

Sharing the load for Issy

When Eva first came home with me a friend put me in touch with another family, from my home town, who had a little girl with very similar issues to Eva. She was blind, with micropthalmia in one eye and anopthalmia in the other. She wore a conformer in one eye, just as Eva would have. She was hearing impaired, and like Eva was tube fed.

Also like Eva, she was missing part of her corpus callosum. She is now three and cannot sit, stand or walk. But boy can she giggle.

Click the photo to go to Issy’s Give a little page.

I emailed her mother Amanda after my friend told me about her and she welcomed me into her home to meet her daughter Issy and her older daughter too, who stroked Issy’s hair and showed off her little sister with pride.

It was such early days for me. I was so encouraged by this family. They were getting by with a child very similar to Eva, on paper at least. It gave me a glimpse of what Eva’s life might be like and how normality would return. When I met Issy she was giggling and smiling. Playing on her swiss ball and stroking sensory toys. Eva was still so small then, the future was just a huge question mark. but seeing this family, and this happy girl, gave me some hope and made me feel less alone.

But here’s the thing, this family makes it look easy. But it’s not. We make it hard for these parents. It shouldn’t be. Issy can’t walk, can’t sit, can’t stand. But there is equipment that can help her do those things. Equipment that could give her more opportunities to interact with the world around her and be an active participant in her own life. This equipment shouldn’t have to be fought for. It should be given out to the families that need it. But it’s not. It’s expensive and it’s not always funded.

Issy’s family needs a new seating system for her as well as a car to accommodate this gear. I only just got to see the beginning of the kind of gear and equipment Eva would need. I wrote a post just the day before she died about how I thought I’d need a bigger car.

Issy’s family are fantastic, positive and warm people. They do the best for Issy and their other children, but they shouldn’t have to be scrambling to fund raise for Issy’s gear. The government should cover this. This should be a no brainer.

In lieu of that, a good friend of Amanda’s has set up a Give a Little page to help them cover the costs that funding doesn’t.

Even if all you can give is $5. Please do. This family could use the support. The benefits for Issy are countless and priceless. Sadly, everything has a price tag, and when it comes to special needs equipment that price tag is often astronomical. Let’s help share the load on this one if we can.

She had nothing to prove

It’s amazing the little scenarios that shake me up. They are obvious to me, but so benign to others that I sometimes can’t quite figure out how to react in that moment. So I flounder and then fixate on it afterwards. Beating myself up for what I should have said.

I was at sign language class last week and the instructor started going round each person asking them if they had children. This was all without words of course. He was going around the circle of people and I was sitting beside my new friends with their gorgeous baby girl at the end of the circle. As he asked each person I felt panic rising in my chest. Do I say I have a daughter? How do I indicate she has died? I didn’t know the sign for that and all the things I could think of to indicate it were grotesque and inappropriate.

I also thought about the silence that would descend on the already silent class after I signed that yes I had a daughter but that she was gone. It got to me and I shook my hand and head. No. No children. I had promised myself I wouldn’t deny Eva, ever. But in a language where I couldn’t explain, couldn’t reassure, couldn’t sum up, I was stumped.

I thought about it all night. A week later and I’m still thinking about it.

This baby should not be denied.

This baby should not be denied.

Then the very next night I met a man who worked as a fundraiser for Child Cancer. I told him about Eva and he was asking various questions about her. Then he paused and said, “I’m going to ask you something you’ve probably been asked before.” I tensed up, ready to respond.

“When she died, did you feel relieved?”

I didn’t pause to think or compose an answer.

“No. No, I didn’t feel relieved”.

He nodded and smiled and I saw pity in his face. Like I should have. Like I was under some spell of love which stopped me from realising the truth. Like he knew better and I was the lovestruck mother who couldn’t see the forest for the trees.

I wanted to make him see.

“I know where that question comes from,” I started. “I think before Eva I would have thought someone in my position might have felt relieved.”

Here I paused. Knowing where his question stems from, where those thoughts have roots, deep roots, how do I convince him or anyone that her life was worthwhile in and of itself?

“She was a very happy baby,” I started and faltered.

Telling people she was happy isn’t enough. People have this idea of children with disabilities that happiness doesn’t shatter.

It’s like the misconception about people with Downs Syndrome. “They’re such good natured, happy children,” is the rhetoric spouted by people. It makes them feel better about the Syndrome and the parents. It’s ok for those parents because their child is happy and easy and good natured. It’s a myth. Children are children. Children with issues around mobility or senses or development will find some things frustrating, just like any other child. That frustration can be difficult to handle. I can imagine when Eva got older, she would have made that frustration clear to me, either physically, or verbally. I am confident it would have been difficult. Very difficult. For me and for her. This difficulty would have challenged me, but it would not have made me feel relieved. It would have been hard, and I’m positive tears would have been shed, but it would not have taken away from who Eva was.

When our toddlers hit us and bite us and scream at us (which they all do, syndrome or no) we might throw our hands up. We might find it difficult. We never once wish them gone permanently because of it. An afternoon off, sure! But their death would not be a relief.

Maybe I was spared of those moments. Those times when Eva wasn’t a “happy baby”. Maybe I have been spared of a future where Eva, like many other CHARGE kids decided to stop sleeping at some stage of toddlerhood. I will never know what her future looked like. And that doesn’t feel like a relief. It feels like a life sentence. I can imagine what she might have done, and what she might not, but I will never know.

And it doesn’t feel like relief to me.

Maybe it feels like relief to others. Others who didn’t understand her, or how much I loved her. Maybe they see me and think, well she can start again. She is unburdened. “Eva’s in a better place.” I wasn’t prepared for that man’s question. I will be next time. I will tell you just how unburdened I am not.

Trying to define her worth by her being a happy baby is not enough to me now.

Her life had quality and an essence all its own. She was a person. She did not have to be happy for anyone else but herself. She did not have to prove anything to anyone. She has shown people a lot, but that wasn’t her duty. She existed and experienced and laughed and loved. She owed no one anything. Just as I owe no one anything. And you owe no one anything.

You and I are not tasked with proving our worth. We would be horrified and appalled if someone asked our family and friends if they were relieved by our deaths. We are not asked to prove we are people with personalities and something to offer the world. So why should she? Why should I have to try to explain her worth to people? Why should I feel I have to assure people of how happy she was in order to prove she should have continued to live?

This man’s question comes from a specific place. He works with families with very sick kids. Families who see their children suffer. His question comes from a place of seeing Eva as a baby who was suffering.

CHARGE Syndrome is not an illness or a cancer. It was something in Eva’s genes, just like her blue eyes and her lovely blond hair which was looking like it would be curly. It was in her but it did not define her. She didn’t suffer from it. Although parts of it did cause her pain and sickness.

We don’t look at “normal” people who get sick and think their value is in anyway diminished. We don’t feel relieved about their deaths because they were inflicted with some illness. We don’t want them to suffer, but that doesn’t mean we feel relieved by their death as if they were a weight we had to carry.

Eva was a person who I was very excited to see grow and develop in whatever way she saw fit. She would have had challenges and I was ready and willing to help her face them. I was looking forward to trying to make the world fit her, rather than the other way round. It is the world which makes people like Eva disabled. It is us, her fellow humans, which give her the label of disabled and continue to make life difficult for her. If you put aside her health concerns, it is the world she was born into that defines her blindness and deafness as a disability.

We put in stairs instead of ramps. We are the ones who make having a wheelchair a difficulty. We are the ones who grumble when someone with a wheelchair gets into a bus and takes up that section of the bus reserved for them, never thinking about the logistical challenges it took them to even get on that bus.

We are the ones who feel that the death of a baby like Eva should feel like a relief to the mother. Eva didn’t feel that way. And neither do I.

Eva was not my burden and no, I don’t feel relieved.

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No one else can say that

Since Eva died people have told me about recent research which shows that during pregnancy fetal cells migrate into the mother. Tonight, I sat on my couch, watching TV, drinking wine and I looked down at the pictures of Eva, still to be hung and I felt a physical lurch in my stomach.

I felt her. The feeling of her presence was so palpable and yet so illusive. I looked at her smiling face and heard her laugh but I couldn’t grasp it. I couldn’t hold onto it. It slipped away as soon as I tried to fix my gaze on it.

I turned to google. And sure enough I quickly found the research which states that “fetal cells migrate into the mother during pregnancy. Fetomaternal transfer probably occurs in all pregnancies and in humans the fetal cells can persist for decades”. I wanted to see this myth in writing. To know the truth of it. To feel that truth and to feel closer to Eva.

And sure enough. There in black and white science it says that I carry Eva in me. Physically as well as in my metaphorical heart. In Eva’s funeral leaflet I had E.E. Cummings poem, I carry your heart. That poem feels so resonant for me, and it’s true. I carry Eva in me. Quite literally. It’s comforting and heart wrenching at the same time.

Now, three months since her death, life is ticking along. My classes are going well. Assessments are being completed. But every few days I feel the air sucked from my lungs as the reality of the loss of Eva hits me again. As if my brain had tried to let me forget momentarily. I don’t blame my brain, it’s just trying to get by, but the shock of that feeling still hurts just as much.

I look at the photos of her, so animated and full of vitality and it doesn’t seem right. It doesn’t even really seem possible. Sometimes it still feels like I’ll wake up from this to Eva’s snuffles on the baby monitor.

But I know that’s not going to happen. So I let myself feel that loss and try to think about how this girl who got so little time still lives on in me. So many people loved her, but I am the one who carries her in me. While many feel her loss, no one else was her mother. I feel both honoured and weighed down by that responsibility. Because no one loved her more. And now, no one misses her more. While many miss her and mourn her, no one who mourns her lost what I lost.

I’m feeling sorry for myself. I’m missing my daughter. But I’m also feeling lucky that I got to be her mother at all. That I get to carry a bit of that girl who meant so much to so many people in my very stomach. I get to know Eva has literally changed my physiology, my anatomy. I am a different person because of her and I carry her heart in my heart. No one else can say that. 11006370_10153118878090799_1085089886074086215_n

Avoiding the flatline

I wrote a few weeks back about meeting the couple at sign language class with the deaf eight month old daughter.

A couple of weeks ago they told me there was a high probability their gorgeous girl was also blind, or at least had visual impairment.

When the mother said this I felt myself mentally suck in my breath. A hundred things went through my head. I wanted to say, “shit”, and worse. I wanted to give her a hug. But I also wanted to be able to react as if this wasn’t the worst news you could be told. Because it’s not. It’s devastating. It’s a blow. But it’s not the worst thing, and I know this because I was told it too. I wanted to try and hear her and listen and respond in a way that was helpful instead of histrionic. I wanted to behave as a peer and an understanding parent with common ground rather than someone who feels pity or sadness and ignorance. I didn’t want her to feel that this news needed to be isolating, more than she might already feel. But I also didn’t want to dismiss it as if it was nothing. Because it certainly isn’t that.

I paused and then asked the question I would never have asked before. “Is there anything else?”

I’ve learnt from Eva that when doctors and therapists and nurses see more than one anomaly or issue, they go looking for others. The mother then told me her daughter is also hypo-tonic. Low tone. Like Eva was. She needs extra help with head control and sitting, just like Eva did.

After being in a very similar spot to this girl’s parents I found myself in the strange position of not knowing quite how to react. I know what the wrong way to react was when it was me it was all happening to, but everyone is different. The words that soothed me might irritate someone else. The perfect thing to say to me might infuriate and insult someone else. There is no fool proof response when people are in this situation. No matter our experiences, we are all searching for the right words.

So I decided right then and there that I would try to help in anyway I could. I didn’t, and don’t, want to crowd them or make them feel like my experience was universal, but if they can benefit from anything I learnt in Eva’s short life, that would be a good thing. So I offered to send them the tactile and co-signing matrixes I had been working on for Eva and give any information or contacts I might have if they are helpful.

I found a massive gap in knowledge around deaf/blind communication in my immediate vicinity, and while I am far from an expert, being able to pass on what little I learnt would at least mean they had a jumping off point.

Meeting this couple and their lovely, happy little girl, has felt both serendipitous and painful. Connection with them means I get to see this lovely little girl who reminds me so much of Eva, but that is simultaneously brutal and beautiful. I watch them with her in class. I listen while she giggles as her dad blows kisses on her cheeks and I think about what it would be like if Eva was at that class with me too. I picture the two of them on the floor, rolling around together. It makes me smile to imagine it, but that smile is quickly replaced with tears, wishing it were the case.

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I get the feeling they would have got on well.

Eva’s death has been philosophically, emotionally and socially life changing for me. I’ve realised I would rather embrace the brutal if it means I get to have the beautiful alongside it. I’ve been teaching my year 10s the novel Warm Bodies this term. This zombie novel has big messages about how we should live our lives. It talks about life being like a heart monitor. We can live in flatline or we can experience the highs and lows, the peaks and troughs that life is meant to have. If we live in flatline we may as well be zombies. Emotionless. Safe. No surprises. Or we can risk the lows and win the chance at the highs. I taught this book before Eva was born, but when I talk about it to students now it feels real. Eva embodied this idea. To love her was to open yourself up to a world of beauty and pain. You couldn’t have one without the other. They were two sides of the same coin.

One thing that meeting this family has cemented for me is a need to keep involved in the special needs community, either in a professional capacity, or through volunteer work. I’ve been thinking about how and where I could do this and a few ideas are starting to take shape.

I’ve started investigating the possibility of a move into Educational Psychology and will be spending some time with my school’s special needs programme to see how that side of education works at a high school level.  This would be a long term plan, and I would want to keep teaching full time while I study. Since I went back to university to become a teacher I have been trying to decide where my teaching career will take me, and the idea of being able to help families and schools to find solutions to help children with extra needs to learn and live is so exciting to me. I was doing it for Eva every day. Helping her achieve what she could within the parameters of her day to day life. I’d like to keep doing it for other people. I’d like to help other parents and teachers to provide the best for kids like Eva.

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