Finding a balance 

Prepare yourselves… This may be a long blog! It’s been a whirlwind week since my last blog and so much has happened! We’ve visited Lincolnshire Fire and Rescue, we’ve been around the Lincolnshire Police Dog Training Facility, and we’ve had the ONLY Police Mustang in the country come to our house! Just amazing. But then we’ve had more hospital appointments, more stress with DLA and more heartbreak caused by this hideous thing called Duchenne. 

I will start with today’s hospital visit. Today was the day that we met the specialist for Duchenne in the East Midlands. I’d not heard great things about this Dr, but I went with the intention of giving her a chance. I was pleasantly surprised. She was lovely, very knowledgable and seemed to be genuinely caring. The appointment wasn’t as bad as I thought it would be, probably because we’ve had almost 3 months to come to terms with it all since diagnosis. The Dr herself even said that we were coping brilliantly and were very knowledgable ourselves. However, I can’t rest easy until I know we are doing our absolute best for Hugo. Whilst Nottingham is a fantastic hospital, it is not the best for Duchenne. We’ve had in depth discussions about the future care for Hugo since this appointment, and it’s very hard to decide where we want his care to be based for the duration of his life. Personally, for me, as nice as this Dr was, I know she is not the best in this field. I don’t want to get 15 years down the line and regret settling for second best. Don’t get me wrong, she knows her stuff, but I NEED the very best for my baby. With that in mind, I think we will still go down the route of a referral to Great Ormond Street. The care there is out of this world, it is the leading hospital for Duchenne in this country and that’s where Hugo needs to be. Hugo, as ever, was an absolute little star at the appointment and he brings a smile to the faces of everyone who meets him. 

Over the last week, I’ve been swamped with thoughts of ‘this isn’t how I planned my life’. This was triggered on Monday when Danny and I had grabbed a subway and was eating lunch in the car. ‘Pure Shores’ by All Saints came on the radio, one of my favourite songs from when I was younger. It made me think of the days I used to sit on my windowsill in my bedroom blasting out music, imagining having my own family one day. Never did I imagine back then that one of my babies would be diagnosed with a life limiting condition. No one ever imagines the things that could go wrong in life, which might be why it’s such a shock when it does happen. Thoughts like that always come with the niggling feeling of ‘why me, why us, why Hugo’. Then there are the prompts, the things you see in everyday life, that remind me of what’s to come. Seeing a man in a wheelchair on a ventilator, seeing a child coming out of a wheelchair access car. The dark side of Duchenne never goes away and it is in my head everyday. 

However, the boys have had some amazing memories created over the last week. On Saturday, we visited the fire station on South Park. They took us out in the fire engine, let the boys play with the hoses, Hugo tried on the uniform and we all had cake with the firefighters. It was a lovely couple of hours and they went to so much effort to put a smile on Hugo’s face. 

On Tuesday, we were invited to the police dog training facility at The Showground. PC Jon Peacock took each of the boys around the Showground in the police car with flashing lights and sirens. They absolutely loved it! We all then went on an off-road adventure in the police 4×4. Getting stuck on a hill was a favourite moment for the boys! We met a few other police dogs and of course another cuddle with the gorgeous police puppy, Olly! 

Then, after the upset of discussing Hugo’s condition in depth at his appointment today, we had a wonderful surprise! Lincolnshire Police have managed to get the only police Mustang in the country for a few days. They called to ask if they could pop round at 7pm with a surprise for the boys. We didn’t even know ourselves what it was! The excitement on the boys faces when it pulled up was just amazing! They spent a good hour playing in the car, setting off the lights and sirens and couldn’t believe the fastest police car was sat on their driveway! It was simply magical! We cannot thank Lincolnshire Police enough for their efforts, and they are really going the extra mile to put a smile on our faces! 

So all in all, Duchenne may have changed our lives, but we are not letting it destroy our lives. Making memories with these boys is my absolute priority. And whilst I wish with all my heart that Hugo didn’t have Duchenne, I wouldn’t change him for the world. Duchenne may make our lives difficult, but it doesn’t make our life rubbish. I still cry for Hugo every day, and none of this is easy, but we have to make the best of what we’ve got. 

Here are a few pics of our recently created memories! 

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