By his side

Lockdown for us was life. I never realised until Covid came along. Chatting to Kade, when it all began, I asked how he felt. “Well it’s no different to how things have been for me”…point made.

As time went on and I watched every one lose it. I reflected upon how I had felt for the last five years.

I watched everyone on a mass scale go a little mad. Exactly as I had all those years ago. Things I had fought for alone, for years, suddenly became common place. People upset about their children missing key moments in life, trying to work and care for the kids at the same time, splitting your self into a million pieces just to try and get through one day and make sure every one is OK. Survival mode is what it is called. Your adrenaline takes over and the rational part of you dissepears out the window.

This way of life will change you forever. It changes your kids in a way you will never have realised possible. You will watch them break into tiny pieces. You will also see them shine. The stress and strain on relationships knows no bounds, people who never ever pissed you off before, will drive you insane.

So what next. I made the decision to live one day at a time all those years ago. No plans for the future no trying to keep up. No pressure on any one. Keep it simple. I found many people could not understand this way of thinking, it cost me many a friend and relationship. However it has worked for me and if I am happy then my kids are happy too. That ultimately is the most important thing.

If all you do one day is put the bin out then that’s fine. If you do fuck all then that’s fine too. You are allowed to rest and be messy. It is fine not to know what you are going to do tomorrow. It is okay that your kids do not want to engage with online learning. My youngest has not done any. When I asked him why he simply said “teachers are for at school not in the house, it doesn’t feel right”. We give every one else a break about how they are dealing with this lockdown so why not the kids. What works for one person does not always work for another. Kade is happy to do his online tutoring it works for him. They are different people.

Since the last time I wrote I have managed to avoid going to a tribunal for Kades PIP. His mandatory reconsideration came back afew months ago and the DWP were not for budging. So I wrote three sentences on his appeal form and hoped for the best. A date came through for a tribunal hearing. Then suddenly I recieved a phone call saying that for the next five years he will recieve the care and mobility rates he fully deserves.

The last battle is with the Ombudsman which I cannot go into details about as it’s confidential but I hope to be able to update about this in the near future.

I have no idea what the future holds for Kade. Most kids his age are planning for their next stage in life. We just focus on keeping him in a good routine. Which is not easy as his executive function skills are very poor. It is what he needs most right now and do you know what, that is fine. It works for us and it is nobody’s business to be telling you what you or your kids need. You know so just ask your self. Worry not about people judging your choices as it is you who deals with the consequences, not the person sticking their ore in with their suggestions.

I enjoy the smaller moments more now. Like watching Spiderman with my 14 yr old, it is nice that he still wants to be around his mum. Walking with Kade and Onion to the beach yesterday, Kade in a t-shirt and it was minus who knows what temperature. Seeing little Onions bum wiggle as she followed him around. She may be only six months old but she knows why she is here. A daft puppy who can drive me insane some days, sees Kade fall over on the way up the hill. She stands next to him watching until he climbs to his feet again, then carries on, by his side.

3 thoughts on “By his side

  1. I want to say something but my words seem useless, I remember when we were all at Gairloch and Kade was at the beginning of his story. You express yourself so well Emma, your readers for a brief time are lost in your life, the life of Kade and you as a family. Thank you for sharing these words, showing such immense courage that they bring to the world outside or your own. When people complain about the Pandemic I bet you want to knock their heads together, I have been through worse than the Pandemic, but your challenges are much much more than mine were. So Emma you brave strong woman, Kade has your heart. Love Brenda

    Liked by 1 person

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