Chapter 2: Palatable differences

This post was written in April 2021

It has been 6 years since that appointment, I have interacted with 100’s of health professionals in that time and with that in mind I am comfortable saying that the consultant acted like a bit of a twat. Clearly I was not alone in concluding this, as when we saw her again 3 months later she made a completely unprompted apology for her twatishness. Nevertheless the experience battered me, it was 2 years before I would attend any kind of medical appointment without my husband tagging along. As a fiercely confident, self assured woman that is quite an admission. I wont go into specifics about the doc’s attitude and behaviour, if she is reading this she knows who she is and for everyone’s sake lets hope she took some developmental points from our interaction.

In any case the consultant decided to refer us to genetics and order an urgent blood test. She believed that my daughter had achondroplasia. We saw genetics 3 weeks later who took one look at my daughter and dismissed that. But everyone agreed that there was enough of a possibility that something was awry that further exploration should be done. At this point the chest tightening panic came in waves.

A baby of 6 months old doesn’t really do much. She seemed pretty much the same as her brother was at that age. Sure, she couldn’t roll over or sit up yet but every baby is different right? Looking back through my old phone there are so many videos of her (way more than I made of her brother). I remember taking them – determined to capture her ‘averageness’. I would watch them back and say to myself and anyone who would listen ‘look she’s normal’. I was desperate, I thought about little else. I googled till my head hurt. Became an ‘expert’ in genetic conditions. Every week I convinced myself she had a different syndrome and read everything I could find on it till the subject was exhausted. I see now that I stopped seeing my daughter clearly, stopped enjoying her and just being her mother. I observed her, recorded her and most painfully I endlessly compared her.

In my mind I tried out all these different versions of what my child’s future would look like. It became obvious to me that some things were palatable, and some weren’t. Physical challenges were OK, if she needed help with walking, lifting, eating anything physical I seemed to be able to mentally process this. If she needed surgery, I was scared but I welcomed the opportunity to prove how strong she was.

But what if she wasn’t smart…. This scared me more than anything. Every time I allowed my mind to go to a future where she would have learning difficulties, I felt sick and dizzy. My life suddenly felt out of control and I wanted to run away.

What does that say about me? I would rather my child have a physical disability than not be clever. What even is clever?! I honestly believe that charisma and positivity will serve you much better in life than academic prowess, but I could not get a hold of myself on this. It doesn’t matter what I want to think or what I know it is right to think, forcing yourself to not FEEL a certain way is not so easy.

I have always taken my academic ability for granted, school wasn’t hard for me and I was raised to feel completely unlimited. Whatever I wanted to do, I need just apply myself and all was achievable. I wanted my children to feel this same freedom. I found myself completely stifled by the thought that my child would face struggles that I didn’t understand.

My husband dealt with all of this so differently. By nature he is far more relaxed than me, he didn’t google anything, wasn’t interested in planning out her future, he was seemingly happy to carry on simply enjoying life with his little girl. Oh what bliss!

Over the next few years it seemed there was barely a branch of the NHS that didn’t want to have a look at my child. No one came up with anything but no one wanted to discharge us either, we collected consultants like Pokemon cards. My daughter cracked on with the business of being a toddler. She was, and still is a wildly happy child, she is always smiling and constantly singing. But her temper and defiance are legendary. There is no denying that she is hard work. She doesn’t sit still, doesn’t listen to reason and loves to be filthy at all times. But she is funny, charming and irresistibly cute.

There were long periods when I was able to quieten my inner voice and feel normal. But the question of school loomed ahead and I agonised about whether or not she would be ready. As it happened she was born in the summer term so we had the option to decelerate her admission to school. My husband didn’t like the idea, my Mother disapproved, but I knew it was right so we met with the head teacher and it was agreed that she would start school the following year and continue her education with the 2019 cohort.

So we had an extra year of preschool and nursery, an extra year of getting ready for big school. Surely that would be enough time to sort out the shitty pant situation…. Right?

Next blog post – Faecal Incontinence

Faecal Incontinence

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