Thank you for sharing your story with me. You’re right – our paths have been so similar. Your analogy of SMA as a bomb is perfect. (I have to admit, I wish I had come up with it!!!) And, the thought of rebuilding afterwards is so very daunting. It took me a long time to pick up the first brick.

I’m glad that this post makes you feel less alone. It took me several days to make the decision to post it, since it is so personal. But, you just made it worthwhile.

xoxoxo,
Audra

The isolation is one of the worst parts of SMA… I’ve never felt so utterly alone, even from the people who knew and loved me the most. Like you, my identity was completely demolished. Becoming Molly’s mother was the biggest part of me and yet the world could no longer see that. Who was I and how would I survive? I wasn’t the girl I was before Molly but now the world could no longer see that I was her Mum either. Like you I had to take medication just to get through at first which I tried to avoid but admitted in the end I needed help (I was sinking fast and was afraid I’d never make it back – a truly scary and awful experience).

After a few months I also took a part time job to try to get at least some routine into my life and I can relate so much to what you say about other people saying how well you cope. I became a great actress and it was easier to play that role sometimes, but behind closed doors that tsunami of grief, guilt and sadness would always wash over me.

Finding a way back to myself (not the old me but the new me with bits of the old me in there!) has been tough but I’ve been determined to find a way out of the darkness. I’ve been lucky enough to have counselling free on the NHS for nearly two years now (I think you guys call it therapy). My counsellor and I have talked through many of the overwhelming and complex feelings that exploded when the SMA bomb went off in my live over two years ago now. With time I have learnt to look back at myself with compassion and forgiveness and see that girl struggling the best she could in a horrific situation. Don’t get me wrong, I still play scenes and decisions over in my head, I think I always will, but I understand I was just about coping in an impossible situtation and more than anything I loved my daughter with every part of me, pushing down my own grief with all of my might so that she wouldn’t see my fear and absolute horror at what we were told was inevitable. When I watch her videos and see her smiling and singing (Molly was and is the most vocal baby I’ve ever known!) I know she felt safe and loved, and I feel proud of that.

Slowly, I’m starting to build a new me. It’s like the house I’d dreamed of (i.e. my life) was blown apart when Molly was diagnosed with SMA. I’d look around me and all I could see was rubble and had no idea how to re-build. Slowly, brick by brick with each day I’ve built a little bit more and now when I look around me there’s the foundations of a new house forming, it’s not the same as the old one, there are recognisable characteristics here and there, but it’s taken on a new shape and form. It wasn’t the house I dreamed of and based all my expectations on, but it’s a new home with it’s own identity carved out of a mixture of the past and a new future. In the beginning just getting through each day was a struggle, just putting a few bricks together was more than I could cope with. But now when I look up I see walls forming, a structure coming together and the whole thing seems more solid. At long last I’m starting to see the potential and with potential comes hope.

I look forward to reading the second part of your story and thank you for being truthful, showing the vulnerablity we all feel behind the ‘strength’ the rest of the world sees. In doing so you’re helping others like me feel less isolated and alone. Love to you all xxx