It's not all doom and gloom

Since Roslyn was born it has felt like an uphill battle with one thing after another: one diagnosis after another, waiting for one surgery and then another and just a general expectation that bad news is always around the corner.

Roslyn has been a bright light in the midst of it all with her smiles, giggles and cheeky personality. We love her wholly. Including the sticklers and the PRS. She wouldn't be our little Rosie with out them and wouldn't have her awesome, strong and brave personality without her experiences.

But it took time to feel this. I know when she was a few hours old and I was fanatically googling in a search of what was wrong, I found mostly doom and gloom. It made things so much scarier.

Over the past 7 months I have now lived through a lot of the things I had feared in those first few days. Some things weren't as bad as I thought they would be and others were harder. Somethings just didn't apply at all.

One thing that got me through was joining support and awareness groups online and connecting with other families who are currently going through the same thing or to be able to see families who are the otherside of difficulties.

I began talking to another first time mum called Mo through one of these support groups and we were able to build a great connection based on our little girls. Mo's daughter is called Isla and was born within days of Roslyn. Isla has PRS and stickler syndrome - just like Roslyn.

While chatting over the past few months with Mo we were able to share our experiences and offer eachother advice and support. Sadly, we soon discover that the different care and treatment for the same conditions are sadly so different across hospitals within the UK and unfortunately some parents have to make sure their voice is louder than other parents in order to heard. I'm really glad to be a part of their story and for them to be a part of mine and Roslyn's. I'm so proud of both Isla and Roslyn who are wireless as I like to call it (no NG and npa yay!), and thriving.

Recently, an opportunity presented itself for us to meet in person. I was visiting family in another city that was close to where Mo lived. The weather was amazing. The company was even more amazing. It felt like a breath of fresh air to talk to people who just "got it".

It felt good to finally have a positive thing result from Roslyn's PRS/sticklers. It's lead to something that I'm sure is going to be a really good friendship between Bart and me (Roslyn's parents) with Mo and Drew (Isla's parents) and hopefully between Isla and Roslyn. I think it would be nice for them to have a friend who they can relate to through all of this.

So we would have never met these amazing, strong parents and their gorgeous daughter if it weren't for the PRS/sticklers.

So it is not all doom and gloom.

Onwards and upwards from here!