Our Shining Star

imageThis week we watched our nine year old son be presented with awards and an amazing end of year report. We could not be prouder.

We watched our five year old daughter get up on stage in front of hundreds of people and sing and dance along with her preschool peers. Two years ago this would never have happened. Next year she is a big school girl. We could not be prouder.

Tonight we watched our (just turned) four year old daughter reluctantly get up on stage with her sister and preschool peers. She stood in the front row.

For the whole entire first song she stood mute and still whilst her friends sang and danced.

Just before the song finished she caught a glimpse of her big brother in the audience who was waving proudly to his little sister.

A huge smile escaped her lips, she waved at him and in a big strong voice she said ‘Hello Orlando’. We all laughed.

We could not be prouder.

For the second and third songs she sang and did the actions and her smile was contagious at the end when everyone clapped.

We could not be prouder.

This year our darling little girl had so many tests. With a big sigh of relief the specialists have ruled out Lukeamia, Tumors, Bone Deformity and all sorts of other nasty things but finally muscular dystrophy. She has unofficially been diagnosed with a brain injury that has affected her central nervous system.

You see, a few days before her and her identical twin sister were born there was a massive transfusion of blood from one baby to the other through the placenta. Her twin suffered a very serious brain injury. We assumed Lucia was extremely lucky and managed to come away unscathed. After spending her first three months learning how to breathe on her own we thought this was amazing.

For eighteen months she has suffered immense pain and recently lost her upper and lower reflexes. She often walks on her toes and shifts the positioning of her body so she never has to fully feel the entire weight of her body on her weak and exhausted muscles and joints.

She can’t ride a bike.

She can’t ride a scooter.

She can’t jump.

She can’t turn on a tap or brush her teeth.

She hasn’t managed to successfully toilet train.

Her body hurts.

Her body doesn’t move or work like yours and mine.

She knows this. She doesn’t care.

She can walk into a room of strangers and draw people to her without even trying.

She has the most intense concentration you’ve ever seen in a child just turned four.

She can make us, her family, laugh until we have tears.

She can play imaginary games with her big sister for an entire day and still come up with new ideas.

She can spend hours at the beach exploring with her siblings.

Tonight when we watched our littlest person on stage a lump caught in our throats. My husband whispered in my ear ‘I’m so proud of all of them, but seeing her up there after all she’s been through …. It gives me flutters in my heart’


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