The Best Conversation I’ve ever had

What’s the one thing you’d change about our life as parents?

I wish that I didn’t have Epilepsy.

I don’t.

Really?

Yes. Because your epilepsy has encouraged me to be a much more active Father than I might’ve been. It doesn’t make me very proud to admit, I mean, I’d always wanted to be a parent, but the way our society works I think that if you didn’t have epilepsy I might’ve just done less. I don’t think it would’ve even been conscious but, the truth is, it’s likely I would’ve done less. And I might’ve thought that was OK. And that would’ve been sad. I wouldn’t quite have known how intense being a parent is and I wouldn’t have felt so involved or bonded with our baby so early on. I wouldn’t have believed that going to work was a break or realised how Sexist society still is.

Without epilepsy I might’ve allowed myself to say things like “Well, I have to go to work, so I can’t get up at night” or (at 6pm) “I had such a full on day at work, I’m going to have a rest…” or “I’ve been at work all week so I’m going out with the guys this weekend”. Seemingly little things which add up to hours and hours of my daughter’s life. Of our life. Of experiences that I will never have again. Of seeing her crawl and wave and say ‘Papa!’ of dirty nappies and endless bottles, of  night after night after night, of 1,2,3,4,5am of laundry and cooking and trying to get a vegetable into her. Of what it’s all about, of what I chose when I chose you and we chose to have her.

It’s strange to admit but I guess we have epilepsy to thank for encouraging me to ignore Societies acceptable-male-behaviour to remind me that I am not the Babysitter I am a parent. Equal in all ways to you. We are in this together as partners and having Epilepsy in our lives reminds me of that. And that is an immeasurable gift.

24/7

24/7

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Epileptic Choices

When I got home the tears poured out. “I want to be like them” I choked. I wonder if they thought that I’m like them???…………………………………. I’m writing this blog for myself, but also for any other Epileptic expectant mummas out there.  I want to say to you; very simply; You are not alone.

Belly!

Earlier:
The seat squeaked as I sat down. Six other woman sat around the room like a collection of swollen Russian dolls, we smiled awkwardly. Sweaty hands gripping partners.   Brightly coloured cards decorated the walls and the neon lighting blinked overhead. The scene seemed familiar. The chairs where too low, the tables all in miniature, last time I’d been there I’d been a teacher, now I was a pupil once again.  It felt like I’d wandered onto the set of a sit-com. At any moment I expected a wall to fall down and a camera crew to reveal themselves, knocking over props with a big fuzzy microphone. But it didn’t happen.The room spun and righted itself and I tried to pay attention.
I’d chosen to come to this. This was my first ante-natal class. This was Hypnobirthing. This is what I want to learn about to give myself the best chance of having a positive birth experience, for me, for my husband and for our baby.

the-wise-hippo-header-logo

The class was fascinating and overwhelming. It made me start thinking about birth much more than I have done. That this is real, that it’s actually going to happen. I felt encouraged that I’ve already done so much work on the mind-body connection, I am grateful for my experiences with TMS and Chronic Pain for giving me a head-start on that… but then comes the but…

As the class wore on I steadily became aware of something. Most of the discussion seemed to be revolving around one word. ‘Choice’. The smiles grew and people talked about their choices. Their choice of birth place; hospital, home or birth centre. Their choice of care giver, their choice of birth, natural, medicated, supported, unassisted. Their choice to trust in their bodies rather than in Doctors. I should’ve felt grateful that I live in a place where there are such choices. But the truth is I didn’t. In a great cliché the walls seemed to get closer, leaning in on me. It was as if I was in a small glass bowl looking out at all these blossoming Mummas and their ‘choices’. I felt smaller and smaller, like Alice after she’d drunk the ‘drink-me’ potion.

My fists clenched and unclenched. Anger, which I know is just Fears body guard ran through me, irrationally and pathetically. I looked at myself in that bowl and didn’t like what I saw. I don’t want to be that person. Bitter and frightened, angry at myself, at others. You see, the thing is having a hidden disability like epilepsy often means my choices are limited. By others, by systems, by laws and even by myself. Epilepsy makes my body an unreliable witness to life. It is exceptionally hard for me to choose to trust it. Epilepsy means I don’t have a long list of choices. Instead I have a long list of people telling me what I can’t do. So it was hard. Hard to sit and listen to their choices. Hard to listen to them discuss what they wanted. When honestly, what I want can be summed up very easily. I want not to have Epilepsy. I wish that with all that I am. If I didn’t have it, I could join their excited chatter about choices. If, if, if.

Our homework from the course is to think about what we want. Well, what I want is impossible. So I cried. Eventually I snotted out that I just ‘wanted to be like them’……as soon as I’d said the words I stopped. Dragged myself out of the hole of self-pity I’d been throwing myself into. Our baby danced and pushed out against me. Our baby, who knows nothing of this, nothing of epilepsy or prejudice, nothing of fear and ignorance. Our baby who knows only, dim light, warmth, soft sounds and the safety of my womb. Our baby who was made with love, in love, by love. I thought of that babe who has already made us parents, made me Mumma. And I remembered I do have a choice. A big one, one that no one can take away. And it is this; either I can see epilepsy as my fault, as horror, pain and darkness or I can see it as the bringer of courage, the teacher of strength and the lense through which Love is amplified.

happiness-is-a-choice

I will find a way to work out what I want. I will remember that I too have choices. I will go back to the next session of the course. I will look forward to it even, because I know that having epilepsy is just part of me and that is more than OK.

Belly!s

 

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Dear Baby

Thinking about you on Brighton Beach

Dear Baby,

So it’s been another few weeks since I last wrote to you. Before we talk more I think I should add a note to the readers of my blog which I started when you were just a distant spark in my dreams.

*~ I started this blog as my own cathartic corner of the web, to speak my truth and share the challenges of some of the labels I’ve been given, particularly epilepsy and chronic pain. Now I find myself adding a new label. ‘Expectant Mother’. This means that whilst I don’t intend to let the blog be entirely consumed by baby-talk, this pregnancy thing is pretty all-consuming! Therefore I suspect much of this space will be baby-related for a while at least. I make no apology for that. If you no longer enjoy my ramblings then there’s plenty in web-world to aid you get rid of baby-stuff from your life such as unbaby.me (you’re welcome!) I’ve been overwhelemed by the lack of imformation and support for pregnant women with epilepsy so I hope by sharing my experiences others might feel empowered to do the same. ~*

So baby bub, back to you. Yesterday your Daddy and I got to see you again. This was not a regular ultrasound. No this was extra special just for you! Because of all the epilepsy medication I’m taking the Doctors who have been looking after you and me wanted to make extra sure that your heart is growing as they would like it to be and that my medicine isn’t affecting you.

This is you in your Green and Pleasant Land!

This is you in your Green and Pleasant Land!

Although I was really looking forward to seeing you again, I keep trying to trust my body and believe that you know how to grow big and strong to meet us without us checking on you all the time. However, the Doctors around me all seem very scared by Epilepsy. Sometimes I think they are more scared than me. They want to check you all the time and I’d really like to just let you do your thing. They made me feel really nervous. This scan felt like A-BIG-DEAL. For a start we had to go all the way up to London to a massive hospital called Tommies. We had to go there because it is the only place in the country that has a machine strong enough to see you in enough detail.

It was a very hot day and by the time we got there I was sweaty and tired. The hospital is somewhere I have been lots of times before as it is where my epilepsy doctor – the neurologist is based. It was absolutely packed and as we walked down the corridors I felt more and more scared. You felt very heavy in my tummy and I had to stop every 10 minutes to go to the loo. Not to mention you’ve been keeping me awake at night quite alot…and I’m still being sick!

this

How I am currently sleeping

Eventually we found our way to a new part of the hospital I hadn’t been to before, the Evelina Children’s Hospital. It was light and airy and after the crowds  in other parts of the hospital it felt like an air-conditioned oasis. It is also organised by ‘Arctic’ theme which made it fun trying to find out where we had to go. And I think it definitely helped me cool down! Our appointment with you was in the ‘Polar Bear’ area. There where lots of very sick children in the Evelina. I hoped that we never have to come there with you, although the staff we met were completely wonderful and I thought how lucky we are to live in a place with access to a facility like that, all totally for free.

When the scan started your Daddy and I were amazed by the technology. We could see you so clearly! I saw your face. It looked cheeky and happy! You were bouncing up and down on my bladder – no wonder I kept needing the loo!! Your heart is currently the size of a pound coin and we listened to the sound coming out of each of your four heart-chambers. They all sound slightly different. The sound filled me with more joy than I have ever experienced. I can’t begin to imagine what it’s going to be like to actually have you in our arms. Feel your breath and your heart beat on the outside of my skin. The lady who did your scan was the best person we have so far seen during my pregnancy (we’ve seen approx. 20 different people! Midwives, GPs, Obstetricans, Neurologists and many different nurses) she was the best because she was kind, unpatronsing, calm. She talked to you – did you hear? She listened to us? She said your mission is simple. Grow fat. Get out. Get cuddled. That’s it. My mission is not to listen to all the scary things the Doctors in the system keep telling us. Because, she said, you are perfectly gorgeous and everything is OK.

I am so grateful that the Evelina exists and I’m grateful you’re OK.

Till next time baby-bub

Love

Your Mumma

 

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Dear Baby

You in my belly at 20 weeks

Dear Baby bub,

Today I decided it’s time to start talking to you. I read that you can hear me now, who knows perhaps you can even hear the keys tapping. I’m your Mumma. You have been growing in my belly for 20 weeks now. I feel so overwhelmed by talking to you, there’s so much and nothing to say all at once and I don’t know where to begin. All my life I’ve wanted you. Your Daddy and I dreamt of you and now I can feel you. I’ve started to imagine what it might be like to actually see you. I’m letting myself believe you’re really on your way now. At first it all seemed surreal, I couldn’t believe it. But now my tummy’s swollen and I know you’re squiggling around, pushing and stretching. I hope you’re having fun in there.

Out here it seems that summer has finally remembered England and I can lie in the garden to write. I roll up my top and sun my tummy and I wonder if you feel the rays on you too and listen to the sea-wind in the trees. There’s no reason why you should know, but before you came along my body was pretty broken and I wondered at points if making you would ever be possible. But I healed and there you were, growing and growing deep in my belly, making the world seem quite wonderful!

I’ve been reading lots of books about how to help you come out into the world to meet us as easily as possible and they all tell me the same thing. I have to trust my body. Now that’s something I’ve found really hard. I’ve wondered how to explain why to you and here it is. I find it hard to trust my body because I have something called Epilepsy. That means that sometimes I fall over and get confused. To stop me falling over I take medicine. It is annoying falling over if you don’t want to and it makes it hard for me to trust my body. Right now you’re swimming inside me but I expect you will fall over lots of times in your life, it’s hard to stay upright on earth! Everyone falls. It is nothing to be afraid of. The important thing to remember is that after I fall, I always get up again.

So, I’ve been thinking and thinking about what I can do to help learn to trust my body even though I have epilepsy. And I’ve realised there is one thing my body has done that I haven’t had to take medicine for. Something that my body’s done all alone is to make a place for you to grow in. A place where you are safe and loved. I haven’t had to help. My body knew all on its own how to look after you for the past 20 weeks. If my body can do that then there’s no reason why I shouldn’t trust it to carry on caring for you until you feel ready to come out and see us.

I can’t believe that in a few short weeks you have taught me so much and have helped me to see how to begin to trust my body again after so many years. I couldn’t have done it without you. Thank you.

Your Daddy and I already love you so much Bub and we are so excited to meet you.

I’ll write again soon. Stay well. Keep growing!

Love

Your Mumma x

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