Nine Truths From Nine Years

Beautiful October, in all it's raw truth. 

It brings big Feelings, and I'm learning that this is a gift. 

I wasn't sure what to do for Rett Syndrome awareness, and I haven't written down my thoughts properly for quite some time. 

But I'm going to try and keep it simple. 

I'm going to share nine Truths I've learnt from Nine years of my Beautiful Niamh and life with Rett Syndrome. 

I'm conscious this comes from my prospective as her mother, this isn't her prospective... I think it's important to highlight that. 

I know she would have so much to say. And I'm pretty sure some day soon she will start to share her thoughts through her eye gaze. 

I look forward to that time. And I will be sure to share what she thinks. 

But until then. It's Me... As self absorbed as I sometimes feel it is. 

But perhaps what I share might help someone just starting out on their journey.

One . 

You do not have to take the same path as others on this motherhood journey, there is no wrong or right, it is about what sits well with you and what you feel is right for your child's health , emotional wellbeing and happiness. You may find yourself on a path less troden , and that is absolutely okay. Outcomes speak louder the popularity of choices. Intuition and Gut instincts are usually right.  

Do your own research. Get really fucking informed. 

Two. 

You may never get an answer for that burning question that sits in your heart. Or certainly not one that eases the burn of the question. "Why Her?!" 

Let it burn, you may just find it will start fires that make your world warmer and brighter. 

Three. 

It doesn't get easier. The grief, the challenges, the journey. 

However, YOU become stronger, you will grow around it, and when you take a moment to stop and take a breath... Look around, it is pretty fucking incredible what you have created and how far you have travelled. 

It's a rollercoaster and you will get used to the ride. 

Four. 

Absolutely no body will understand what it feels like for you. We are all so incredibly different, different characters, experiences and life choices. It will feel incredibly lonely at times. But I think this is actually relevant in life in general, regardless of situations... Every single human being feels lonely and unrelatable at times. So ironically... Not a single person is alone in that. 

Five. 

The fight for support, help and care is relentless, it is a full time job. It is like hitting your head against a brick wall. 

It shouldn't have to be that difficult. 

Six. 

To Watch your child struggle & be in pain is ( I think) the most soul shattering experience. It goes against absolutely everything as a mother, not being able to "Fix" it is indescribable. Niamhs Battle is my Battle. It's is exhausting, I can't imagine how tired Niamh must be. 

Seven. 

Humour is essential, don't forget to be able to laugh.. especially at yourself. And yes, I have developed a dark sense of humour, I think it's really really helpful. 

Eight. 

Don't look to far ahead, take life day by day, maybe week by week if you can... But don't try to go to far beyond that...you will overwhelm yourself. 

Nine. 

This journey will change your perspective on life , completely, and ( I believe) in a exceptionally brilliant and positive way. You will see things others dont. You will care less about the small stuff. Even when it seems like you are in the storm... The Glimmers will shine threw ... And they will far outshine the dark clouds around them. ✨

here's one more... Because 10 is an even number ✨🤍✨

It takes a Village....a mighty, beautiful, strong and dedicated Village. The Need and desire for help does not make you a failure. 

The Village you create will be a sacred part of life. Honour it. Embrace it.