In a Different Life

When I was pregnant with my first child, I imagined all the experiences I would have with my son. As I’m sure all expectant mothers do. Not just the first few weeks and months, but also the years ahead.

Breastfeeding, cuddles, learning to walk and ride a bike.

Trips to the park, standing on the sidelines watching him play football or rugby, and waving him off for his first day at Secondary School.

Little did I know that my life with a first born child would be so different.

Different.

Not worse, in fact sometimes better – And certainly much more interesting and fulfilling in ways only a Special Needs Parent could possibly imagine.

Tube feeding, cuddles with wires everywhere frightened you would knock something that was keeping your baby alive. Bringing your baby home for first time, aged 6 months.

Lennon’s first day at school.

Learning to walk in a frame aged 5, fundraising for an adapted wheelchair bike.

Spending endless days, weeks, months inside a tiny hospital room.

Today, in the life I imagined myself leading this time 12 years ago, Lennon would of started Secondary School. I would be straightening a wonky tie, taming messy hair, shining a pair of smart black shoes and watching an 11 year old out of the front door.

That day was never meant be.

Instead, I would of been administering a ton of medications, changing dressing, emptying stoma bags and packing medical equipment and supplies ready for the day ahead. I would of smothered my gorgeous boy with kisses and cuddles before pushing him out of the front door in his wheelchair and onto the school bus.

Trying to get a photo of them all together always took many attempts….
Finally!

But I am not doing that either.

Instead I am waving off only 2 of my 3 children for their first day of the school year. Florence into year 1 and Isla into year 6.

If you told me I could have Lennon back, even for the shortest time, and I could choose between the Son I imagined all those years ago, or the Lennon we were given, I would never choose the life that I imagined and dreamt of.

I would always choose the Lennon I know and love and our extraordinary life.

Lennon having fun at school, his favourite place.

There will be many Special Needs Parents sending their children off to school this morning wishing that they were on their way to a mainstream secondary school.

I’m sat here wishing my son was alive and that I was standing at my door waving him off on the school bus to his severe learning disability school, watching his beaming smile and flapping arms as the bus turns the corner at the bottom of my road.

The last ‘First day of school’ photo of all of my children x

Back to school, back to reality

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Back to School 2016 – Lennon year 5, Isla year 4, Florence morning preschool.

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.

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Back to school 2017. Isla year 5 starting at middle school, Florence starting in reception.

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.

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Back to School 2012 – Isla reception, Lennon year 1.

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.

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Our mobility car being taken away.

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.

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Lennon and Mummy x

Previous blog post – Moving on