Mojo has Microcephaly. I don’t think I’ve ever told you that. Not that it’s a secret of course it’s just that, for us, it has always been secondary to the Holoprosencephaly. Microcephaly sits on her list of clinical diagnoses unmentioned, untreated, it just, is.

Simplistically, Microcephaly means having a clinically small head. Look it up and you see that, like many complex conditions, there are multiple causes including chromosomal and infection. Holoprosencephaly is listed 17th on the list of chromosomal causes on Wikipedia. Mojo has a microcephalic head because the two hemispheres of her brain are fused at the front. Her horseshoe shaped brain is small and therefore, her head is small and for us, aside from occasional hat shopping incidents, I don’t give the visuals of it much thought.
That sounds spectacularly dismissive given the fear and furore which has spread across the world with the news of the Zika virus and it’s association with Microcephaly in infants. I don’t mean to be dismissive, not at all, I have been deeply moved by the footage of babies across the world with the familiar head shape which Mojo and many of her friends share in common as a result of their Microcephaly. Familiar is the operative word because when you associate your own baby so closely with other babies they feel familial. I have the urge to protect them, love them, tell them how spectacular they are, tell them it’s going to be okay, there is life after diagnosis. Not least because the world continues to refer to them as defective. How I hate that term, birth defect.
NOUN
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a shortcoming, imperfection, or lack:
For what it’s worth, here is what I have learnt. Every single child will write their own story, do their own thing, irrespective of diagnosis, prognosis, text books and World Health Organisation advice. I’m not going to lie, it’s hard work. The only thing we as parents can do is deal with symptoms as they arise, fight hard for the best support, not take anything at face value when it comes to can’t and won’t and most importantly love. Love, love, love, so much that nobody could ever question your child’s quality of life because how can any life so filled with love be described as defective.
Unconventional, without question,
Defective, absolutely not.
What a lovey post, I have seen the news and to be honest haven't given it much thought. Only because I get so consumed in out own little bubble. I think your advice is amazing, having been told not to have any more children after Ethan. I'm so glad he now has a sibling, it was the most amazing gift ever x
Such a powerful post, thank you. I sometimes wonder if those who comment under newspaper articles have any sense of empathy with their judgemental opinions. "Live and let live" is what I tell my children, even if others in their schools don't. Thank you for linking up with #SSAmazingAchievements
Thank you so much. Am sure the news would have washed over me had the word not jumped out! I think if we had thought too much and taken too much 'advice' we might not have our number two either and like you we see it as such a huge gift. Thanks for commenting xx
Thanks for reading and leaving such a lovely comment. Hopefully enough of us are growing up learning (and teaching) to live and let live so there will always be more kind comments than mean ones xx
Mojo, you are simply the sweetest angel baby.
Mojo, you are simply the sweetest angel baby.