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Mourning the loss of normal

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Everyone has a vision of how they’d like their lives to turn out, for me it was the simple normal life, a few kids, a dog and a nice house. So what happens when life throws you a massive curveball in the form of a disabled child? 

At our 20 week scan we found my fibroid doubled in size. Worst of all it was impacting my baby. We were told the baby had club foot but it was only positional so would be easily rectified with a bit of physio. The second was that part of our baby’s brain hadn’t formed. A part called the Corpus Callosum. We

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were offered a termination there and then which still haunts me to this day. We very swiftly declined. We were then given a lot of facts about the condition in our baby’s brain, agenesis of the corpus callosum, and were told that there’s an 80% chance our baby would live a fully functional normal life. There’s that word again, normal. At 35 weeks it was decided I would have a planned C Section at 37 weeks.

October 2018 arrived and my section date came around and we were so eagerly excited to meet our little one, to see if we had a boy or girl.

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We asked for the screen to be dropped so we could find out together – still the best moment ever. The screen was dropped and we, both in shock and through elated tears, said “it’s a girl!” This was short lived though as our second thoughts were “ok she looks very poorly”. Her legs were up to her ears, her arms were limp and purple and her hands and feet were deformed. They whisked her straight off for a brain scan. We naively thought it would be fine as my last scan, the consultant told us not to worry as the brain appeared perfectly healthy.
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How wrong were we, something more serious was discovered and she would need to be transferred to The Trevor Mann Baby Unit in Brighton. I cannot explain how heartbreaking it is watching your baby leave with strangers, in an incubator, whilst you have to follow a few hours later. It’s a memory that still raises that tight lump in my throat and stinging eyes now. 

It was an agonising few weeks whilst we waited for the results. I was shaking and felt so sick walking into the room for those results. We were told she had a brain condition called

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polymicrogyria and a muscle condition called arthogryposis. 

I’ve learnt not to Google these conditions as what good does that ever bring. We will go off of how she’s developing, which is pretty bloody fabulously. I’ve been in some dark, dark places throughout this. I’ve cried more tears than I ever imagined I could, I’m surprised I still have some left. I’ve mourned the loss of our normal family life, normal holidays, normal summers, normal day to day actives. I’ve mourned for Islas loss of a normal sister, holidays for them together,

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nights out, being each other’s bridesmaids, having children together. Everything ‘normal’ I ever imagined we’d have, Ive mourned the loss of.  

6 months on and I’d never ever imagined at the start we’d be where we are now. My girl is INCREDIBLE, she’s defying all odds and flourishing. She’s developing just like any other baby her age, she’s exclusively breastfed (which I’m told is amazing for a baby who was tube fed for the first two weeks) and she’s taking to weaning perfectly. Her physio is coming on incredibly well, her arms

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are gaining small movements and muscle tone, her feet have responded well to treatment and her core strength is fab. 

I’ve learnt a lot in these 6 months, I’m not the same person I was, I’m more broken than before but also stronger than ever. I’ve learnt to trust in my girl and how determined she is, she’ll prove anyone wrong. I’ve learnt that this is our new ‘normal’, our new remarkable normal family and we wouldn’t have it any other way. 

Our Evelyn Rae, we’d chose you, in a million lifetimes, we’d always chose you. 

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- 19 Mar 19

 

Everyone has a vision of how they’d like their lives to turn out, for me it was the simple normal life, a few kids, a dog and a nice house. So what happens when life throws you a massive curveball in the form of a disabled child? 

At our 20 week scan we found my fibroid doubled in size. Worst of all it was impacting my baby. We were told the baby had club foot but it was only positional so would be easily rectified with a bit of physio. The second was that part of our baby’s brain hadn’t formed. A part called the Corpus Callosum. We were offered a termination there and then which still haunts me to this day. We very swiftly declined. We were then given a lot of facts about the condition in our baby’s brain, agenesis of the corpus callosum, and were told that there’s an 80% chance our baby would live a fully functional normal life. There’s that word again, normal. At 35 weeks it was decided I would have a planned C Section at 37 weeks.

October 2018 arrived and my section date came around and we were so eagerly excited to meet our little one, to see if we had a boy or girl. We asked for the screen to be dropped so we could find out together – still the best moment ever. The screen was dropped and we, both in shock and through elated tears, said “it’s a girl!” This was short lived though as our second thoughts were “ok she looks very poorly”. Her legs were up to her ears, her arms were limp and purple and her hands and feet were deformed. They whisked her straight off for a brain scan. We naively thought it would be fine as my last scan, the consultant told us not to worry as the brain appeared perfectly healthy. How wrong were we, something more serious was discovered and she would need to be transferred to The Trevor Mann Baby Unit in Brighton. I cannot explain how heartbreaking it is watching your baby leave with strangers, in an incubator, whilst you have to follow a few hours later. It’s a memory that still raises that tight lump in my throat and stinging eyes now. 

It was an agonising few weeks whilst we waited for the results. I was shaking and felt so sick walking into the room for those results. We were told she had a brain condition called polymicrogyria and a muscle condition called arthogryposis. 

I’ve learnt not to Google these conditions as what good does that ever bring. We will go off of how she’s developing, which is pretty bloody fabulously. I’ve been in some dark, dark places throughout this. I’ve cried more tears than I ever imagined I could, I’m surprised I still have some left. I’ve mourned the loss of our normal family life, normal holidays, normal summers, normal day to day actives. I’ve mourned for Islas loss of a normal sister, holidays for them together, nights out, being each other’s bridesmaids, having children together. Everything ‘normal’ I ever imagined we’d have, Ive mourned the loss of.  

6 months on and I’d never ever imagined at the start we’d be where we are now. My girl is INCREDIBLE, she’s defying all odds and flourishing. She’s developing just like any other baby her age, she’s exclusively breastfed (which I’m told is amazing for a baby who was tube fed for the first two weeks) and she’s taking to weaning perfectly. Her physio is coming on incredibly well, her arms are gaining small movements and muscle tone, her feet have responded well to treatment and her core strength is fab. 

I’ve learnt a lot in these 6 months, I’m not the same person I was, I’m more broken than before but also stronger than ever. I’ve learnt to trust in my girl and how determined she is, she’ll prove anyone wrong. I’ve learnt that this is our new ‘normal’, our new remarkable normal family and we wouldn’t have it any other way. 

Our Evelyn Rae, we’d chose you, in a million lifetimes, we’d always chose you. 

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