I always knew this was going to be a tough story to tell. I’ve started this blog post a few times over the past couple of weeks, writing, deleting, writing, deleting – and now here I am again having decided that though it’s going to cause me heart ache, it’s time. It’s probable that the hardest part will be this bit, the beginning.  Where hopes, and dreams, and expectations, and plans, come crashing down – and life is filled with grief, and shock, and fear.  I still cannot look through Helena’s first year of photos for long before I am reduced to tears or descend into depression…. so it’s going to be tough….. and I might need your help with that.

On the other hand I think I am now fairly well adjusted, and I am eternally grateful for the life I’ve had so far with my girl.  So the story at least ends well – if not the way I would have written it if I had my way.

It’s a strange, sad, funny, enlivening, depressing, frightening, weird, journey and it’s ok. Except when it’s not… because sometimes it just isn’t. It’s been a life devoid of ‘firsts’ – no first words, no first rolling over, no first crawling, or taking first steps. No first play-dates, no first day at school….. FIRST SMILE did happen, but not until she was 7 years old. – It was a very very very long wait, and I will remember that day held deep in my soul until the day I leave this earth. The soaring elation of that one moment…. balanced out the dark pit of fear and grief and exhaustion experienced daily in the 7 years previous.

But I am leaping ahead.  So here it is… the first half year.

Day one – when everything turned to custard…. an uneventful pregnancy, an uneventful full term labour – not too long, not too short.  And a large pink beautiful snuggly baby girl…. who didn’t breathe.  A very unfortunate series of events (which I might one day share – but find I can’t just yet) – lead to this:

At a day old I was woken in the middle of the night to be told she had to be bundled into an ambulance and shipped from our small local hospital to a much larger concrete jungle …. because a nurse thought she saw her fitting.  There my ten and a half pound baby was placed in an incubator alongside a room full of teeny premature 1 and 2 pounders.  She looked liked a 3 month old in comparison. The scalp vein was stuck in her head and never used… done as a matter of course in that ward despite the fact that they already had 2 umbilical feeds and it was never going to be needed…. an action that is standard practice for premmies where the umbilical feeds are harder to achieve. We endured 5 days of hell in Waikato Hospital, and we escaped back to Thames as soon as was humanly possible… at which point I began my plans to escape from there, to home.

I fully accept that three and a half weeks is nothing in comparison to how long many families have walked the hospital halls – but for me it was pure torture.  And when we finally escaped I vowed we would never be admitted again…… and we haven’t been.

3 and a half weeks and home at last…

Two common practices at that time made life much, much harder for Helena. Though I am grateful that neither treatment is applied anymore it remains a scar on my soul that my girl is as injured as she because of what they did to her. There was also a massive over sedation on day one that she didn’t properly wake from until after I arrived home with her over three weeks later. And when she did wake she started screaming.

She cried and cried and cried, all day, every day, for hours on end, and 3-4 hours every night. My amazing mother used to take her out to the car inside the garage and sit in there with her with ear muffs on so I could get a little rest. It helped to bounce her around, so I swung her, and danced with her, and bounced her day in and day out until I just couldn’t – I spent a great deal of time in a mental fog.

At 6 weeks old the paediatrician passed her as ‘normal’ neurologically, which was patently rubbish… and that was the point I decided I wouldn’t take her back.

They then assigned a Neurological Therapist to us (despite her being normal?) – who on her first visit (a pleasant young graduate who knew nothing) told me I should be putting Helena on her back rather than on her front on the floor….. it needs mentioning here that Helena spent most of her time in a full back arch, so taut and rigid that when placed on her ‘back’ she would touch down on the floor with her heels and the back of her head…. so this was a monumental piece of rubbish and I fired her……

I was determined to breastfeed – in hospital they had decided that I would never be able to, citing ‘tongue thrust’ (which she didn’t have) and so would give me no more than a minute to try before whipping her off and shoving a tube up her nose and into her stomach. So it was the milking machine for me…. until I got her home when we went to our bedroom shut the door and got onto it… it took us a day and one missed ‘meal’ to get it going….. As time went on Helena found herself drawn into increasing back arches as her body rigidity increased.  Each feeding session was a series of latching on, drinking a little and then being dragged backwards, unlatching, bouncing to calm her and going for it again… until she was too tired to continue at which point I would express the rest and bottle feed…. then I could follow her head and body as it dragged backwards.  We did that for ten months when she finally made it clear she’d had enough.

At five months old she had her first seizures…. and they stayed a daily part of her life.  Though throughout the journey there have been times when she has been seizure free. At least when she was having a seizure she wasn’t crying… unless she was having a screaming seizure when the demons loomed large for her.

That first half year was hell on legs. For her, for me, and for my family – we all coped the best way we knew how, and I remain truly, madly, deeply grateful for the help and support that we unerringly had from my incredible mum and dad.

It is no exaggeration to say that I hardly slept – and neither did my mum.  It was impossible for Helena to sleep lying down.  Even when I had bounced her to sleep and she seemed in a deep slumber, as soon as I tried to lower her horizontal she would wake and it would all start again, so I slept for years lying on my side with Helena propped up – arms and head over my hip, stomach to stomach – it was strangely beautiful, despite my lack of rest, mental fatigue, cramp from lying in a rigid position, and emotional turmoil…. I was at least close to this surprising creature who I loved with an inexplicable passion that touched the depths of my soul in a way that nothing and no one ever had, or would and that I have no words to describe. It was the path to our bonding.

And then she would wake as she inevitably did in the middle of the night and the screaming would start…. and up we would get into the kitchen to bounce and dance and fly around the room in the middle of the night…. and my divine mother would join me and sometimes it was a cup of tea, and sometimes it was a cocoa… and sometimes it was a sherry…. but not often because that’s the slippery slope my friend.

And there it is – the first half year. In some way devoid of details, which in part is because my mind has numbed the memory, it was mostly pretty grim.

Thanks for reading! – I’ll be back soon.

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Angela xx