When it’s not going well

I haven’t uploaded a blog post in a while. That doesn’t mean I haven’t had a lot to say, there are SO many things I could have written, so many things I’ve wanted to shout from the roof tops about – but none of it was ‘inspirational’ and none of it had a ‘happy ending’.

I think writing about situations in the aftermath provides a perspective you can’t see whilst you’re living through a traumatic time. However, what happens when the situation you are living is on going? You see, that’s where we are right now, we are in the midst of a challenging chapter that it appears might take longer to weather than other tough times we’ve experienced before. And I can’t find the perspective I desperately need to make this a ‘worthy’ blog post because I can’t find a ‘happy’ to this.

But, creating a blog full of inspirational stories and manifesting this kind of ‘inspiration porn’ is not what I want this blog to be about because it isn’t sustainable. I can’t pretend to you all that we don’t have tough times. Or that every tough time we go through has some sort of beautiful life lesson. And I don’t think I should wait for the tough times to pass before I write about them with a positive spin. It’s not honest. Yet, somehow I have found myself in this position because I’ve been worried to be honest about our hard. To openly share that our hard is so hard. I’m worried that by being honest I will receive pity. And I would HATE for people to pity our situation.

Do not pity us.

But the truth is – when your child is hurting and unhappy NOTHING in your life can fall into place. You cannot focus on anything else. Your world collapses under the pain, fear, worry, stress and strain. You NEED to make it better and when you can’t find the answers, you fall into the darkest hole of despair in your desperation to fix it for your precious child. You have to be strong for them, all you want to do is to make it better and that takes every part of your being, there isn’t much space for anything else. David and I feel like we haven’t been able to breathe as we’ve held our breath for so long trying to make things ok for our beautiful girl. It’s honestly been so hard to even string a sentence together, it’s been hard to keep in touch with people. It’s been hard to focus on anything else because our minds have only been able to focus on one thing. Louisa. Obviously we have to carry on, there’s no option not to. But we’d swap places with her in an instant. We’d do anything to make her happy and to make this world a less scary place for her.

We have been in a hole trying to get our child out of her turmoil for a while, trying to give her the tools to help her climb out and trying to protect her. Trying to make her happy and to ease her pain. Desperately trying to scramble up the sides of this hole holding her tightly but falling back down with a crash however hard we try and cling on.

Louisa has been hurting and we have had to manage some extremely concerning behaviours. It has been all consuming. It has been painful to live, painful to watch. But this isn’t about our perspective of her pain being difficult, this is about her. Fixing it for her. Helping her. It’s about somehow changing the environment we live in to give her the sense of calm and peace that she deserves.

Luckily we have a good team. Professionals, teachers and carers who genuinely care and who have been dedicated to bringing joy back into our precious little girl’s life. But she is a bit of a mystery and it requires a lot of detective work (and tests and new medications etc) and a lot of trial and error. It’s not an easy road to navigate. And there will always be mistakes along the way. There is no quick fix to make this all better for her. We need to learn Louisa. And as much as I hate to admit it, I’ve been finding it hard to read her. To know what’s wrong. And the frustration and failure I feel as her mother for not knowing how to help my gorgeous girl haunts me. I’ve got so much to learn. And I have to give myself grace that as much as I want to know everything now, it will take time to learn and improve. Unfortunately I don’t have magic powers and I’m learning on the job here.

But, over the past few months, we have all worked hard. Our beautiful Louisa has worked hard. And we believe we are starting to see an improvement to our situation. We are getting systems and routines in place to help. Her days are MUCH happier. Her happy dances are coming back. Her cuddles are coming back. Her distress is easing. And it brings me so much relief and joy to see and say that. And I hope that soon we will see the light at the end of this scary, dark and miserable tunnel. But I cannot lie and say it’s all ok now, because it clearly isn’t. We still have a long road to navigate.

So to all the SEN parents going through a difficult chapter, I feel the deep pain and desperation you are feeling. I know it feels like life can be so bloody cruel to our children. Keep fighting for them. Don’t let the hole swallow you up. Keep going. You have to. Don’t let your inexperience hold you back and make you feel useless and worthless as their parent. You are not those things. You may not feel like it, but it is YOU who will help change the narrative and make it better. Your child needs you to be strong and to find a way.

David and I have to trust ourselves that we are not and will not let Louisa down. We can’t. We won’t. Ever.

And to our precious Louisa. I’m sorry we have taken time to fix this for you. I’m sorry that we haven’t known the answers. Thank you for your patience whilst we learn. I promise daddy and mummy will not let a stone go unturned and we will always find a way to make it better. You are the centre of our universe. We wish we could take away all the scary, difficult and bad parts you have to go through – it isn’t fair – but please know we would never ever change you. Because YOU are perfect. You are the light of our lives and we love you. And, I promise, the sun will shine again.