Because of this, there is always something to sort out. Whether it's ordering prescriptions, sourcing certain medications from different pharmacies, or planning ahead to ensure she won't run short of any "made to order" medicines. Driving from Newcastle to London several times a year to see specialist consultants and access treatments she is otherwise unable to get. Chasing doctors for a new prescription, contacting secretaries to explain why she suddenly can't make an appointment, or making sure her needs are met by continually advocating for her quality of life. Oh, and most importantly, doing whatever I can to keep her out of the hospital. It literally is a full-time job, especially with everything going on in the world, resulting in shortages and delays on certain medications, which without Lauren will end up in hospital.

The other continuous battle is trying to ensure Lauren always gets the best possible care. I naively assumed once she had a diagnosis, everything would fall into place and there would be continuity of care by her various teams of medical professionals. Yet I couldn't be more wrong. Like many people with complex medical conditions, we constantly have had to fight to access certain medications, treatments, and even care plans. Then just as you think everything is sorted, a new issue arises, funding is cut, or guidelines change - so I have learnt to never get complacent.

Something I also never realised was that other people, no matter how close, will never truly understand our reality. Making it even more important to raise awareness for unpaid carers, as we so desperately need support. Yet instead, Lauren can post one picture, and everyone thinks she must be "all better", "no longer unwell" or "not as bad"; all of which couldn't be further from the truth because even on holiday, her disability never goes away and never will.

As a carer and more so a mum, I carry the guilt that comes with being a parent of a disabled child, which leaves you wishing it could be you and not them. It’s heartbreaking to see a loved one suffer. It changes everything, including family life and dynamics. Thankfully over time, I have learnt how important it is to look after my own mental health. Something I'm sure many unpaid carers understand isn’t at the top of your ‘to do list’. But thankfully I have certain people that I can lean on when I need to open up and let everything out.

I have to say, as lonely as it can feel at times, I am grateful to not be the only one looking after Lauren. We are a very close family that tries to muddle through together, whether it's picking up prescriptions, walking Lauren's assistance dog, or washing her bedding after a catheter leak. Lauren also has a fantastic partner, who is amazing at caring for her day and night and tag teaming with me daily. A best friend who is always there for Lauren through the ups and downs and finally, there is Fliss, her wonderful service dog who is simply amazing and has brought so much happiness to the whole family. For all of this, I am very grateful and lucky to have. Living with such complexities is a roller coaster of emotions but we always find something to laugh about, even in the most difficult situations. I no longer grieve for the life we all should have had, even though it has taken many years to come to terms with. But I have and always look forward to our kind of normal and future whatever that may be.