Everyone is showing pictures and memories of 10 years ago – 2016. I’ll be honest this is not a year to celebrate, remember or relive. The photos of me are full of bags and sadness.
10 years ago I got a telephone call from a doctor who threw my world into a downward spiral never to fully come back up again for air. A telephone call to simply say…
Your son needs urgent care at Great Ormond Street
January was rough (to say the least) – hospital visits, tests and prodding of our 3 year old boy: the results Duchenne Muscular Dystrophy. World ends.
February – Matt ended up in hospital with pneumonia. We moved house.
March/April/May/June/July – A blur of constant crying.
August – I got told I was a carrier of Duchenne through a genetic test. My world ended for a 2nd time.
September – I felt guilty that I had passed this onto my boy. I felt lost. I sought therapy at GOSH. I wanted another child (Phoebe was now 1 year old) so we went for advice to look at genetic IVF.
October – a week of incompetent GPs, doctors and hospitals resulted in William being blood tested and rushed to hospitals over and over again – all due to his liver function being different – but this was duchenne, and none of them knew. I then realised I was his voice and had to research every part of this condition and become his medical PA very quickly.
December – I get a telephone call to inform me that I am NOT a genetic carrier. It was read wrong. Totally and utterly lost and incomprehensible. The extended hurt over the last 4 months didn’t need to happen to me.
There’s so much more in that year, and none of it is good. How we got through that, I really don’t know. I couldn’t look to the future as I was so scared of what my little boy would become.
The future is now fully here; he’s still such an amazing boy but we, and he, have lost so so much. Life is so hard, life is so different to what we thought it might be back in 2015.
2016 really is a year I wish I never lived. 10 years later living a life I never dreamed of. 10 years of being a carer, with that care element only getting bigger the older William gets; the opposite of all our friends as their children get older.
Oh and by the way it’s also the year Trump was voted in and Brexit too!! Come on now..