Changing my story

A few weeks ago I was taking my daughter and her friend to their dance lesson. As always, they were in charge of the music whilst I chauffeur them around! That week’s request was yet again the Matilda soundtrack, and despite my protests I was soon singing along to ‘Naughty’ and ‘Revolting Children’. The lyrics are firmly fixed in my memory from hearing those songs on repeat; not because I actually enjoy them! 

The girls’ excitement and dance moves finally came to a stop when Ms Honey and Matilda started singing ‘Still holding my hand’. They were absorbed in the song and I remember smiling at the sudden calm and the soft voices coming from the back seat. As we pulled up at the lights, I looked in the rear view mirror and caught a glimpse of my daughter mouthing the words, looking straight back at me, smiling:

“You were holding my hand

You were just there for me

Quietly taking a stand

Changing the end of my story for me”

I didn’t smile back. Instead, I quickly turned away and shook my head. I felt my eyes prick with tears and fought exceptionally hard to keep them at bay by concentrating on the lights changing to green.  Finally they did and I blocked out the end of the song as I finished the journey to the dance studio. I got out the car, gave my daughter a hug, and shouted “Have fun!” I got back in to the car and drove home in silence, pulled up outside my house and burst in to tears. 

I knew what had happened. It was a ‘trigger moment’. As I looked at my girl singing away in the back of the car, the vision changed to me holding Isaac’s hand in the NICU.  These tiggers don’t happen so often anymore, but with PTSD when they do happen it feels like they come out of nowhere. It takes you completely unaware and in the moment it is frightening. I used to think I was going mad when they first happened. These upsetting images of my dying child would flood my mind at the most random moments and the sheer confusion of it all would send me in to an anxiety attack. My counselor helped me to understand my tiggers, and it appears music is a huge one. Forget the news, tv, and real life tragic events; none of those make me well up! The running joke between my friends and family is that I’m ‘dead inside’! I really don’t shed a tear for the obvious things. But you can’t escape music unless you want to live in a truly colourless world. It’s the power of the lyrics: the words. When Dobby died in the last Harry Potter book I balled like a baby, yet I stood at my son and my mother’s funerals with a dry face! 

Over the years I have found ways to deal with the triggers. I can quickly snap out of those moments. The first thing I do is my ‘snow globe’ move. The shake of my head allows me to change the vision back to ‘normal’. I then breathe and focus on what’s in front of me. Mindfulness: it works in this context well.  I then wait until I’m in a safe space and let it go… Better to let it go indoors. No one wants to see the true face of anxiety. It’s ugly, frustrating, and if I’m honest, scary. The thoughts I have range from grief to playing the blame game. You can’t do ‘normal life’ with PTSD in front of people; and definitely not in front of your young daughter and her friend! I must admit that afterwards I’m slightly in awe of how I cope with them. This control was not possible 10 years ago. And, it’s always a little worse around this time of year. The end of the school year equals the end of my son’s life. A constant reminder of how short a life can be, not that I really need reminding that he should be 11 years old today. 

After that incident, I started to think about ways to ban that album on future car journeys. I’ll go back to upbeat R&B and garage for a bit! But as I scrolled through my iTunes library, I was curious to see exactly what it was that set me off during that song. I read the lyrics that evening, and although I felt the same panicked response start to overwhelm me, I realised something. The words actually associate with my daughter more so than Isaac. I have literally been holding her hand for nine years now! She is the reason I keep going when anxiety overwhelms me. I pull it together at the wheel and keep driving forward because of her. She is the person who ‘changed my story’.  Without my rainbow baby I might still be the angry and broken woman I was when Isaac was taken from me. I know my daughter helped me to ‘park’ the bitterness I feel towards the people who destroyed mine and Darren’s lives. I couldn’t have possibly have accepted the joy and happiness she has brought to my life if I wasn’t able to put that anger to one side. And although I’m not ‘fixed’, although I still have those triggers, and of course, miss my Isaac so very much, I am stronger and more able to cope with life because of her.  

My daughter hasn’t fixed the Isaac shape hole in my heart. I still long for my baby boy and miss him forever. However, those lyrics made me realise something: she is the one who brought feelings of hope back to me. The rest of my heart is now filled with love and admiration for this kind, beautiful child who holds my hand everyday. I think her big brother would be proud of her. And I think Isaac would be okay that this blog is about the hope she gave us because in my daydreams he is still holding my other hand. 

So, this blog is for Isaac’s little sister, Isla. The little girl  who changed my story.  ❤️

If you would like to donate to the Evelina Children’s Hospital in memory of Isaac please go to: https://www.justgiving.com/fundraising/running4isaac?utm_source=copyLink&utm_medium=fundraising&utm_content=running4isaac&utm_campaign=pfp-share&utm_term=4666f5358710496a888acb9da9edefd2