Seven years of HoPE

Mojo is completely in love with the George Ezra song Shotgun (who isn’t right?). We’ve taught ourselves the Makaton for the chorus, Mojo can sound out the ends of the chorus sentences and the ‘yeah’ lines. We’ve had it on repeat for weeks.

I think that the reason we both love it so much is the joy it evokes. It’s a happy song about feeling good, feeling happy, ‘feeling like a someone’!

Life finds us in a very happy place at the moment and the song just captures that plus it has the word alligator in it which Mojo thinks is HILARIOUS.

Sitting in a summer holiday traffic jam this week with both girls grumbling in the back I turned the radio up to distract them and along came our song. We sang and signed our hearts out. The car was stationary, the windows were open and to the casual observer I was on my own and I didn’t care a bit because the joy on the faces of all three occupants was priceless. It was a real being alive moment. A childhood memory.

Today it is seven years since Mojo was diagnosed. We had known something wasn’t right, they had said it was probably nothing to worry about. Then that August 2nd afternoon of 2011 the call came to say it was much, much worse than they thought. I’ve marked ‘diagnosis day’ with varying emotional approaches but usually it is dwelling on that day, that feeling, that moment when everything changed forever.

It was so monumental, the arrival of Semilobar Holoprosencephaly into our lives. It arrived before Mojo did. It stole the perfect baby we were dreaming of and replaced her with a baby who could expect ‘no real quality of life’. We didn’t know at the time that Mojo would come along and replace that baby with a remarkable, strong, determined, clever, resourceful, happy, music loving, life loving, little someone.

Today Mojo is medically stable, growing, learning, developing. Today Mojo is happy, she has a varied and interesting life, she has interests and preferences. She has strong opinions and is getting increasingly able to share them not just with people who ‘get’ her but with everyone. Her vocalisations take my breath away. She got very caught up in the World Cup (although thanks to a school tournament she thought she was from Japan for a while).

Our home is now able to meet her needs, she has a profiling bed, high-low bath chair and all being well by the end of the year we will have a lift, meaning that her physical needs will not dominate our lives to the same degree. We will just be able to live our normal life.

Mojo’s new school is the perfect place for her. It’s warm and familial but focussed and driven to optimise the potential of each child. We had to fight to get her in and it was worth every single frustrating, enraging conversation with the council to see her face when I drop her into class each day.

I can’t say with any authority that those doctors were wrong in general, the ones whose unfortunate job it was to explain to us what our baby’s life would look like and how her condition would affect her. They were just wrong about Mojo. There was no suggestion that day that we might one day find ourselves with the child we see today. She just simply defies the rules, she writes her own story.

In seven years she has taught us so much not just about her but about ourselves, our priorities, about how to live life in the moment and value each and every day. I can say absolutely hand on heart we wouldn’t want our family to be any other way.

Today we celebrate the unadulterated joy of being together and singing (or signing) our favourite songs. Laughing hysterically in the sunshine.


“We got two in the front, 

Two in the Back, 

Sailing along, 

And we don’t look back!”

Shotgun – George Ezra

August 2011

August 2018

2 thoughts on “Seven years of HoPE”

  1. What a very special young lady thriving with the support of her loving family. Such an inspiring story of hope over adversity that puts everything into perspective!


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