I’ve just had a very surreal day. I’m still struggling to actually accept that this Duchenne story is our life, some days I feel like I’m watching a film or reading a book. It’s just bizarre and really hard to explain.
Today was the Lincolnshire Police ‘Women in Policing’ Conference. There was a raffle for Hugo’s fund so Danny and I were invited for the day. We couldn’t make the full day, so we joined after lunch. We saw some truly inspirational guest speakers and met some genuinely lovely people. The theme was based around fear and overcoming it. Very fitting to our current situation and the recent training I’ve done at school.
Not much longer than 3 months ago, we had an ordinary life. One which wasn’t affected by ill health, disabilities or the prospect of losing one of our beautiful boys. A normal ‘struggling to make ends meet’ family, battling through the stress of a hectic life. Yet today, we were sat amongst the highest ranking police officers in the county, and neighbouring counties. I sat there trying to take it all in but I just couldn’t. Hugo’s little face was in the brochure with information about his condition and what the raffle was in aid of. As I was reading it, a part of me was sympathetic to this family who must be going through the worst time of their life. Then of course it clicks, it’s us. It takes me back to an early blog post of mine, when Hugo was first diagnosed. This kind of thing is what you read about other families, or see on Children in Need. You never imagine it will one day be you, and when it is you, it just doesn’t seem real.
The conference was a huge success, the generosity of the officers and guests at the conference raised a huge £2217 for Hugo’s fund. Absolutely amazing. Danny and I drew the first raffle tickets and so many people made the effort to give us their best wishes. It was a lovely, although emotional, afternoon. I still can’t believe just how much was raised in one day by 300 people. Hugo’s story touched everyone’s hearts and Lincolnshire Police have been truly wonderful throughout this process. I don’t think we’d have got through the last few months if it wasn’t for all the experiences that they have provided the boys with. It really has taken our mind of things and given us something to focus on.
The Chief Officer who arranged the event gave us a cuddly dolphin to take home for Hugo. He adores it. We were in the bathroom and Hugo was talking to this dolphin and suddenly says “if you die, I will put you in the bath, get you wet and make you better again”. I had tears in my eyes, he is such a wonderful person with the kindest, warmest heart. It’s moments like this that make me hate Duchenne even more. I hate the fact that Hugo has this condition when he is such a beautiful and caring child. No child deserves any kind of illness but Hugo is just extra special and I can’t justify him having this awful disease.
These are the things that ordinary people can’t relate to. Every precious moment is tinged with Duchenne and there is now an element of sadness in every single thing that Hugo does. Until you are faced with having a child with a life-limiting condition, it’s impossible to fully understand how it feels. I will put my hands up and admit that before Hugo was diagnosed, I couldn’t empathise with parents of ill children, because I didn’t have a clue how it felt. I truly appreciate all the support we have from family, friends, and all the fundraising that organisations/people are doing for Hugo. I couldn’t thank people enough for their efforts. However, it doesn’t take away the dark, lonely hole that we are in. As parents, we live each day dreading the future yet trying to make every single day special. It’s beginning to feel like an emotional juggling act and it’s still exhausting me.
Here is a photo of Hugo in the conference brochure. It’s no wonder everyone falls in love with him. Absolutely beautiful boy.