Little did I know this would be the last back to school photo of all my children together.
I had been dreading this week.
I wanted to be excited for my girls – Isla started middle school and Florence had her first day at school. But instead, I was overcome with sadness.
Lennon would of gone back to school on the same day as the girls (Tuesday) in year 6, still in his PMLD class.
He loved school. I always looked forward to putting his uniform on him for the first day back – his excitement when he realised he was going back to school after 6 weeks away was incredible!
He always looked his best after the summer holidays – the only time his skin slightly coloured, and his hair sun kissed blonde.
I miss that hair.
I fought with myself all day. Sobbing for what I have lost, what I should have, what I want. Heartbroken for the missing face that should of been smiling back at me through the camera lens. But at the same time feeling proud of my girls. That they had gotten through the awfulness of the last month, and were both excited to start at new schools. I tried to push the sadness to the back on my mind and concentrate on feeling happy – but no matter how hard I tried, the tears wouldn’t stop.
I imagined how sad it would be at school without him. The empty space in his class where he sat. His peg bare, and the silence left without him quacking and clicking.
The reality of life moving on hit me.
Lennon’s car was towed away on Thursday. We obviously knew this would happen, but we were rushed into the whole process as the DVLA had removed the vehicle tax after being informed of Lennon’s death.
We had to quickly purchase a new car.
I couldn’t drive Lennon’s car, but I still sat in it. Remembering when it first arrived (it was our first wheelchair accessible vehicle) and Lennon’s beaming face sitting in the back, waving at everyone. We nicknamed him ‘The Pope’ when we took him out in it! I couldn’t bring myself to empty out all his emergency medical equipment from the various cubby holes. And I didn’t think I’d be that upset about it going until it was on the back of the pick up truck, and I spotted the little stick family stuck on the back window.
Our family. Our family of five.
Letters carry on arriving informing us of our benefits stopping, benefits that we had relied on. Invoices charging us for over payments, backdated to the exact date Lennon died. Invoices that I cannot pay, because I now have no money to pay them. All the money we had has been spent on a car so that I can get Isla to school.
I applied for job seekers allowance, wanting to buy myself a little extra time to grieve before returning to some form of work. Only to be told that because I hadn’t ‘worked’ in 10 years I was ineligible. Despite the fact that in those 10 years, I had worked harder and for many more hours than the average person. The fact that I had saved the government and the NHS hundreds of thousands of pounds by providing my son with hourly complex medical care counts for nothing.
It feels like another big kick in the gut – for 10 years you gave up your life, your career, to look after your beloved son. You saved the tax payer hundreds of thousands of pounds. You thought you were doing the right thing. You put everything you had into giving your child the most fulfilled life he could possibly have.
Your child dies. You are lost. Your whole life purpose has vanished. You want to disappear with it. You want life to stop whilst you try to comprehend what has happened to you.
You are told to man up – move on. Get a job. Pay the bills. Provide for your remaining family. Leaving the last 10 years a memory.
So this weekend I have the task of putting my CV together, and trying to find a job.
The one thing I have decided on, is that I won’t be going back to the career I had before Lennon. It’s not me anymore.
I want to make a difference. I want to be one of those people that made a difference to Lennon’s life.
I have enjoyed the work I have been doing to try to Save Nascot Lawn from being closed, and ideally I would like a job doing similar. Unfortunately the only qualifications I have in this are my life experiences.
I don’t want to forget the last 10 years and become a different person – I want to remain who I am, Lennon’s Mummy. And to use all my experiences, everything I have learnt and done over Lennon’s life to shape the person who I become in future.