15th April 2016

Guest Post: The day the bottom dropped out of my world

Emma is one of my school friends – and as adults, we have shared wedding planning and compared growing baby bumps. Her second son Connor was born in 2012, just before Stanley – but on February 4th this year, his parents were given the devastating news that he has Duchenne Muscular Dystrophy. This cruel illness affects 1 in 3,500 boys in the UK – and without a cure, it will be fatal.

I have invited Emma to write about Connor, his family, and his diagnosis on this blog to raise awareness about Duchenne Muscular Dystrophy – and she starts today with a post about the day she got the devastating diagnosis.

As a mother, I didn’t find it easy to read, but I believe it is so important we learn more about this little-known-about disease and support research into a cure.

Grab your tissues and take a read – and make sure you like the Facebook Page Chasing Connor’s Cure, where a charity will shortly be set up and we will be able to follow updates on Connor and upcoming fundraising events.

The day the bottom dropped out of my world

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Meet Connor; my gorgeous, boisterous, fun loving, fancy dress wearing and rather loud 4-year-old boy.

And us; the Crawford’s, an average run of the mill household. Just average, in every way.

Until that day.

It was February 4th 2016; just 4 days after Connor’s 4th birthday.

The day when my world literally fell apart.

We headed to hospital for what I expected to be a routine appointment for my slightly awkward 4-year-old boy. One who had reached every milestone with little concern, but who I just felt wasn’t as agile or quite so able physically as his peers and who was increasingly being overtaken on the stairs by his younger sister. I had expected to be referred for some physiotherapy or some such insignificant intervention – maybe a dodgy hip, one leg shorter than the other or the like. Something small, something fixable.

The reality wasn’t so. Instead, I would find out that my darling, my baby, had the awful, degenerative and life-limiting genetic disease Duchenne Muscular Dystrophy.

For those of you who don’t know about this cruel disease (that was me just a few weeks ago), it is a genetic disorder where the body is unable to produce a protein called dystrophin, an important protein that repairs muscle. As such, his little body will gradually degenerate. His muscles will weaken and usually these boys (as it mainly occurs in boys) will end up in a wheelchair between 8-12 years old. These are the very basics of the disease, I am unable to read or write much more on the future right now, but I do know that life expectancy is shortened and my heart already breaks at the very thought.

Six weeks on from diagnosis and I still struggle to utter the words without tears rolling down my cheeks; so much that I often just abbreviate it to DMD. I don’t know why, but letters seems to cut less deep than the words. My emotions are like that of a rollercoaster, one that is going so fast I am scared, very scared. One that flies high, twists, loops, drops down then climbs back again only to repeat this cycle over and over again. I feel dizzy. Sick. Along the way I have shed tears, many tears – ones for fear, pain, panic, anger, sadness and loss. Tears for Connor and tears for me. Tears for his siblings and tears for his Dad. Tears for everyone that adores and loves Connor as I do.

I don’t yet know why I am writing this blog, why I feel the need to put my feeling into words. Maybe right now it is too painful to talk. ‘Will it ever be any different?’ I ask myself. I suspect not. But maybe I will learn to cope. To be strong, resilient and to have hope. That I must have, that I need, for myself, my children and for my family.

Talking helps, I know that. I work for a mental health charity and it’s my job to know that. But it burdens others, others who are also in pain and it makes it real. Right now, maybe writing words helps because I can pretend this is not my nightmare and that this is someone else’s. That this won’t ravage every inch of my heart and soul, tear through every fibre in my body, steal every ounce of my energy.

From here, this is a story. A story of a mum, a dad and their three beautiful children.

To be continued…

 

For now, the best way to support Connor and his family is to like the page Chasing Connor’s Cure, where a charity will shortly be set up and we will be able to follow updates on Connor and upcoming fundraising events.