I’m falling

I feel like I’m free falling the parachute left still on the plane.

I’m just hurling towards the earth, impact closer and closer.

October has been one crazy month. It was the month of awareness for Rett Syndrome and in my head I wanted so much to get it out there and raise awareness.

I just wasn’t expecting the impact on my heart, It was like yanking of a plaster in one go only to find the wound still bleeding underneath.

My heart is still bleeding and I guess I hadn’t realised the way I had plastered over the cracks. Now I’m realising as the pieces shatter again into unrepairable fragments.

I started this journey, I wanted to do it. It was all my own doing and yes I would do it all again but it hurts, it hurts like hell.

The last two weeks I’ve spoke about Rett Syndrome in the local paper and a national paper and then in a radio interview. And guess what? It was great seeing Rett Syndrome out there raising awareness on a national level it’s been fantastic. Getting the charity Rett Syndrome Research Trust into the hands of hundreds if not thousands is blooming incredible and I have no regrets.

But sharing my story, sharing Livvy has hurt in ways that I never foreseen, call it naivety if you wish.

Talking about Rett Syndrome is facing the fact that she isn’t here anymore. I know you all probably thinking “what she must know this” and of course I do but your head builds up barriers to protect your heart, to protect your sanity. And over the last two weeks I have tore down all these barriers and opened the wound and yes it is bleeding again.

It hurts in every breathe I take in. Every moment, every smell, every noise, every word throws me back into the midst of pain. Into the throes of agony.

People say you can’t ever imagine the pain of losing a child and it’s true you can’t. It’s a consciousness of emptiness that is unreachable accept through the valley of child loss.

That is not a boast it is just a haunting truth.

I wouldn’t change the last few weeks, the awareness I’ve raised outweighs my pain.

True battles are never without casualties and my pain is a little casualty in the war against Rett Syndrome.

Because that’s how I view this devastating condition as my enemy, my foe. It took away my daughter and for that and for many others daughters I will fight against it with all that I have.

But at this moment, in this place in time I’m failing.

As we head towards the 4th anniversary of Olivia’s death I’m just falling.

I know I won’t crash, I know there won’t be an impact. I know Jesus will be my parachute, my safety.


But for now I fall.


My flesh and my heart may fail, but God is the strength of my heart and my portion forever.  Psalms 73:26 ESV

5 thoughts on “I’m falling

  1. Trish Donnelly

    As I lay down to go to sleep on the other side of the world, I want you to know that from one Rett mum to another, you and Livvy are in my thoughts and prayers. your words have impacted me greatly. So honest, so brave, so articulate and so heart wrenching.


  2. lois swope

    I’m just entering this unthinkable loss myself. I’m so sorry that Mom’s and Dad’s experience this kind of grief. For those of us who had children with extraordinary needs, we are left with an even greater loss. We were so vigilant, trying to make the best out of an impossible situation for our children. No stone unturned. We were tireless in our pursuit of wellbeing. My beautiful Karly passed 12 weeks ago today. I’m so grateful that her physical struggle is behind her, but her presence and love and wisdom and insight are so keenly missed. I’m with you in spirit.


    1. admin

      I do feel so guilty at times as I know Livvy is free from the pain, the seizures. It’s so selfish for me to want her back but I just do.

      Thank you for your kind words and support it means more than you know. Xxx


    2. admin

      Oh honey I posted the comment before I added that I’m so sorry to read of your loss out lives seem so different without our girls. My heart is with you and may Livvy and Karly meet together in heaven x


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s