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

Making ends meet

The Guardian published an article written about our financial struggles since Lennon died.

I won’t lie, it was very difficult to talk to a stranger about our financial situation. I talk about grief so easily, but talking about money doesn’t come easy to me.

However, Francis’ compassion and understanding made it easier and I think she has written a very powerful piece.

Both Ian and myself gave up our careers to care for Lennon in the hope of giving him the best life possible. And also because neither of us could put in the effort required to hold down a job whilst getting up every other throughout the night to tend to Lennon’s complex medical needs.

When Lennon died, all of our benefits stopped. Understandably so – we now did not qualify for any of them. The invoices for back dated payments to the exact date of Lennon’s death that arrived shortly afterwards were distressing to say the least. And the thought of returning to work was daunting when all I really wanted to do was hide myself away and grieve for my child.

Both Ian and I pulled on our grown up pants and returned to work. Not to the careers we previously had – too much time had passed. But to low paid jobs with the long term aim of building ourselves new careers.

Not only do we suffer the financial strain, but Isla and Florence have to cope with us working as much as we possibly can. This means that Ian and I are not there for them at a time when they need us the most. There brother has gone and not only are they having to adjust to a life without him, they are having to adjust to Ian and I not being there for them as much as they need us to be and missing out on things that they used to do, like meals out, dance and gymnastics classes.

Yes we lived in benefits, but we also saved the government hundreds of thousands of pounds by providing Lennon with round the clock medical care – If we had of put him into residential care and carried in with a ‘normal’ family life the cost to the state would of been in excess of £300,000 every year.

Would having pots full of money help our grief?

I don’t think anything will stop our grief – it’s here for life. But I do think having money would help bring less strain and a little happiness to our lives.

We want to be able to work and earn our own money like everyone else, but could we not of had a little time to grieve first?!

You can read the article here:

https://www.theguardian.com/commentisfree/2018/aug/30/struggling-families-no-deal-brexit-add-worries?CMP=twt_gu