A Family Reunion

"Find your tribe", it's the advice I give the many parents of children with additional needs who contact me.  It doesn't matter if you child has a confirmed diagnosis, you need to find people who "get it", who understand what it's like to live 24/7 with a child who has taken you for a ride on the extreme parenting roller coaster.

We were lucky (I'm ever the optimist), Daisy received a confirmed diagnosis of Costello Syndrome when she was 6 months old.  At the time she was one of the first children in the world to be tested for the sporadic mutation on the hras gene which causes the syndrome, at the time we were told that it was so sporadic the chances of having a child with Costello Syndrome were 1:1.25million.

The Medical Symposium, the Ordinary Mum and the story of an Extraordinary Girl

I'm writing this in a somewhat jetlagged state......

Yes!  I made it, following my successful crowdfunding campaign I was able to fly out to Seattle to attend the Costello Syndrome Family forum and more importantly present Daisy's story at the Rasopathies Medical Symposium.

When your child has a rare disease (and an even rarer manifestation of the syndrome) then the chance to meet with other families and to discuss issues with the doctors at the forefront of research into the disease is immeasurable.

It is rare to be in the same room as children and young people who look so similar to my own daughter but at the same time it was bittersweet as it really brought home to me how different Daisy also is to the other children who share her gene mutation.

Back to school blues...

I took a little blog holiday over the summer as you can tell, mainly because having all four children at home means there are less hours in the day to indulge myself in writing than normal.  Well the children have been back to school for a week now and I have taken up my usual Sunday evening position at the kitchen table, clean school uniform waiting to be taken upstairs and homework (allegedly) finished.

I think I have the back to school blues though, despite the little bit of daytime respite having the children in school gives me.  Back to school means back to meetings, appointments, form filling and in a couple of weeks another hospital admission for Daisy.  Back to school means back to the reality of my life, reality which was temporarily suspended over our glorious summer break.

You are beautiful, no matter what they say...

I'm not really the biggest fan of Christina Aguilera but her song Beautiful has very special significance for me.  When Daisy was born she was immediately transferred to the neonatal unit at our hospital.  There was always a radio playing in the background during the long weeks she stayed in the unit, when she arrived it was just before Christmas and the soundtrack to those early days was all the festive favourites, but as the days wore on and the Christmas season passed (and the tree outside her window began to grow leaves) the songs were replaced with the regular mix that is endlessly played on Magic FM, London's easy listening station.  And this song seemed to be on a lot....

"You are beautiful, in every single way, words can't bring you down..."