Fleel Good

Last week I was organising my bedside drawers when I came across this note.

It’s a couple of years old. Maybe three.

Fred had written it to me and slipped it under my bedroom door (with a sensory book to ‘fleel’) when I was having a really tough time. I remember it like it was yesterday – I had been crying under the duvet in my bed. I thought I was hiding it from the world. But I couldn’t hide it from him.

My lovely and sensitive boy.

I’d kept this note folded up in my drawer ever since – so it hadn’t been read for a while. But, at that moment as I pulled it out of the drawer, I was confronted by the message again. I sat down and read his words;

Dear Mummy, I just want you to feel good. Feel this book. Love from Fred x x x

I imagined him sitting on his bedroom floor with his felt tipped pens sprawled across the carpet writing these words on paper taken from the printer. Little Fred, who should have been innocently drawing castles, princesses, dragons and knights – was instead writing a note to his desperately sad mummy to try and cheer her up. I felt a deep sense of sadness and guilt.

Sad that I’d been so depressed.

Guilty that my little boy had been a witness to that.

It’s very hard for me to be open about how difficult I found it when we first had Louisa and how difficult I still find things today. Physically and emotionally. It’s hard to admit this and, let’s be honest, acknowledging grief in relation to having a disabled child is often frowned upon, as though by admitting our grief we are devaluing our child.

But for me this isn’t the case, my grief is wrapped up in lots of different factors. I will forever find it difficult to accept that the world isn’t designed for people like Louisa and that her life is filled with challenges. I will forever grieve that there are opportunities she will never be able to have. I will always feel the unjustness. I will always find it unfair. I don’t think any mother can see their child struggle and not feel sad, angry and helpless.

Many of us who feel this grief keep quiet for fear that admitting it appears to somehow endorse the idea that we would want our child a different way. That somehow their disability makes them undesirable. This isn’t true – all I want is my child to be happy. I would do anything to take away all the hard things in Louisa’s life. I would take away all the pain and all the hurt. I would give her a voice that she could shout for herself. That she could have independence. I do not believe that is disrespectful to her, I believe it’s love.

But my grief (I have discovered) has had little to do with Louisa’s disability but rather my own expectations for myself, the loss of the Michaela that I used to be and the life I thought I was going to have. The loss of the Michaela I (had) thought I liked and the life I (had) thought I wanted.

Instead, I have changed. My life has changed. And my honest truth is that I have been completely overwhelmed and I have felt like a complete failure in how I have managed things.

In the past I have been so sad.

Sad that Louisa has struggled and sad that I haven’t been able to fix it for her.

Sad that I don’t know more, that I haven’t got the capacity in me to research more, fight more, learn more.

Sad that I felt like a useless mother, sad that I felt like a rubbish wife.

Sad that ‘normal’ things are difficult to do for our family. Sad that we always have to adapt to fit in, that we’ve had to change our life plans.

Sad that we have become so isolated, that I’ve felt like we are a burden, that I’ve lost relationships with friends and family and the ones that I do still have I barely see. That I don’t have the capacity to be the friend I want to be for them.

Sad that my boys see things they shouldn’t have to see.

Sad that I’ve been so tired and I haven’t always made the right calls. That I’ve let myself go.

You name it, I’ve felt sad about it.

Being the mother of a severely disabled child was thrown on me, I didn’t have time to adjust and adapt. I didn’t have time to find my feet. I was (still am) learning on the job. And the weight of parenting a disabled child will always be more. That’s just the way it is, I get that now. I beat myself up about it less.

As I’ve grown into this new kind of motherhood, as I weather many of the storms time and time again, my confidence continues to grow and I’ve slowly started to find myself and my voice. I’m learning that I no longer want to hide in the shadows thinking that everyone’s opinion is bigger and better than mine. I’ve stopped listening to people who haven’t walked my path give me advice. It’s well meaning but they just don’t get it.

I’ve even realised that sometimes even the professionals are unsure what to do in regards to Louisa’s care. That we are all muddling through trying to find solutions to problems that this rare genetic mutation has thrown us. Instead I’ve learnt to work with them – offering my advice and opinions because I know Louisa the best.

My life experiences are giving me an insight into a whole new world and are opening my eyes to something more beautiful than anything I have ever experienced before.

I have realised that I don’t need to grieve the loss of the old Michaela, but rather find pride in the new and improved one, the one who is learning to advocate, who is not useless or rubbish, who just wants to make my little section of the world a better place for my daughter, my family and the children and families who will inevitably come after us.

Fred’s note is heartbreaking, but it now acts as my inspiration to see the joy. It acts as a reminder to fight against all the heavy stuff that weights me down for Fred, for Louisa, for Albie, for David AND for me.

I want my children to know that life doesn’t have to be perfect to be wonderful. That difficult things happen, but how you learn and grow from these things is what truly gives you that precious strength of character that will do good in the world.

And what my life experience has made me realise is; that happiness has always been here, I had just stopped allowing it to be part of my life. And to not let this happen again.

That being together, that loving one another, supporting and uplifting each other will always make us ‘fleel good’.