Evie

About 2 years ago, my stepdaughter Rachel was undergoing a series of tests and scans to find out what was causing the lump on the side of her skull. Thankfully we knew the lump was benign but we still needed to get to the bottom of what was causing the lump before she could start treatment.

We had to got to the RVI hospital at Newcastle to see the specialists there who were based on the children’s cancer ward. I can truly say that spending the best part of a day on the ward was probably the most humbling experience of my life. To see the children and their families and try and imagine what they must be going through. To see the staff who were so professional, friendly, positive. I’m not able to do justice to them and I’m going to stop struggling to find the words to describe my admiration.

We were blessed that day to meet Evie and her parents. Evie was a couple of years older than Rachel and had been diagnosed with brain cancer. After half an hour in Evie’s company I knew she was someone special. She had a wicked sense of humour, an infectious smile and laugh and an attitude that cancer wasn’t going to define who she was and it was never going to get her down. Her parents were also inspirational and didn’t allow anyone to show them any pity but did what they could to help my wife and I.

Evie and Rachel stuck up a great friendship. They compared treatments and medications, talked about which member of staff was the hottest and everything else that girls that age talk about. Whenever Rachel was feeling down Evie would lift her spirits and make her laugh again.

Evie was bravely fighting her own battles. A new type and a more traditional type of chemotherapy had failed to arrest the cancer and there was no treatments left on offer in the UK. It was suggested that a treatment that was available in Germany might work but it would cost £75k. Evie’s mission was born to raise the money.

Unfortunately there is no happy ending to report. Despite fighting so bravely Evie lost her battle last week before she was able to get to Germany. She was 20. Cancer is a bastard.

Despite being a lot older than Evie i can still learn from her approach to life and be inspired. Even if we live to be 100 we’re only on this planet for a relatively short period of time so make the most of it no matter what cards we’re dealt.

Dream big – Evie had a dream to meet Justin Bieber, and she did – twice. She helped people, she raised money, she leaves a legacy and a massive lasting impression on everyone she met and she met some important and famous people.

I hear people say, why do good people die and some arseholes get to live. Don’t waste time thinking about arseholes, fill your life with love, with laughter, with happiness, with singing and dancing. Be wicked, be courageous, be a friend.

Be like Evie x

Evie’s Mission

Power to the People

So on Saturday I got up at 4.30am to get a bus to take me to London for the Put it to the People march. Considering my Saturday’s normally consist of getting some jobs done and then relaxing on the sofa listening to my team get beat this was no small effort. I finally got home just after 10.30pm!

But the UK remaining in the EU is important to me. I hate what’s happened to the country over the last 3 years or so with the levels of hate crime rising and people from other countries treated with more suspicion and made to feel less welcome. We’re not this big country that can get by on it’s own. We’re stronger when we work in partnership with other countries. I want my children to be able to freely travel, work and study in other European countries. I know people who have already lost their jobs as a result of Brexit and I know people who’s vital supplies of medication have already been affected.

Saturday was a reminder of just how brilliant this country can be. I don’t know how many people were there but a million is probably an under estimate. There was people of all ages, all faiths, from all parts of the country. We didn’t come close to seeing any sign of trouble. Strangers came together and sang, dance made new friendships looked out for one another. It made me proud to be British again and that is not a feeling I have had in a very long time.

So what did it achieve? Only time will tell I suppose. Whilst that many people taking to the streets cannot be ignored I’m not naive enough to think that our PM is suddenly going to change her mind or her so called deal!

What I do know is that if things do go badly wrong I want to be able to look my children, friends, family, colleges in the eye and say “i tried to stop it”.

World Down Syndrome Day

Thursday 21st March is World Down Syndrome Day, a chance to raise awareness of what Down Syndrome is, what it means to have Down Syndrome and how people with Down Syndrome play a vital role in our lives and communities.

I feel blessed to have met so many amazing people with Down Syndrome who have brought me joy, made me laugh uncontrollably and just made me forget about any issues or worries I may have been experiencing at the time. It is a pleasure and an honour to spend time in their company, they have so much to offer.

Fellowship

Yet, in some countries people with Down Syndrome are seen as a problem and a burden. In Iceland, a country which for me gets most things right, expectant mothers are told if their baby will be born with Downs. At this point the vast majority of mothers chose to abort their babies which means that Down Syndrome is very close to being ‘eliminated’. The number of similar abortions on the UK is also on the rise

I’m not going to comment on the issue of abortion but I do know that ‘eradicating’ Down Syndrome is wrong and heart breaking. You wonder how balanced the advice from the medical professionals is. I have spoken to the parents of children with Down Syndrome and yes it is incredibly hard work and you’re having to battle a system that is not set up to help you but looks to put barriers in place. But, at the same time these are people with dreams, with potential, with feelings, with talent, with love – so much love.

We have been sent reminders over the last couple of days from New Zealand and today from Holland that the world can be a truly dark place. I want to finish today’s blog with some uplifting video’s to celebrate some amazing people.

Don’t stop me now

1000 miles

A reunion

So on Thursday rock your socks and celebrate this amazing community of people x

https://www.worlddownsyndromeday2.org/event/lots-of-socks-2019

Find your Voice

I’ve got to admit it – I’m worried, and I’m not the type to get easily worried. I’m worried about what will happen to the UK at the end of March if we leave the EU. I’m worried about what kind of country we are becoming and what values we are attaching importance to. I worry about my kids future, what kind of world are we leaving for them and future generations, are they going to be able to get jobs, are they going to be able to get their own property (I bloody hope so)? I worry about the rise in knife crime and so many young lives being lost as a result. Then I worry about me – am I doing the best I can, have I reached my potential, could I be doing more?

It’s so easy for these thought and feelings to become overwhelming. I’ve been in that place where I think the answer is to block everything out, to switch off, to not care. It’s not a good place – and the thing is, I do care, I care deeply. I worry about the state of the country but I also get angry and motivated to do something about it. There are lots of causes that I’m passionate about and want to raise awareness of.

I’ve always found it difficult to give my opinion and to say what I want to say. I’m a classic introvert and that’s fine, I’m comfortable with who I am and I’m not going to change to fit someone else’s perception of how I should be. Social media has given me a voice and the confidence to say what I want to say and to give my opinion. If you follow me on Twitter (@jimbobity hint hint) I will give my opinion on a range of subjects and topics. At first I hated being challenged but now I have the confidence to know that there are other people who will agree with me and back me up. I don’t mind getting into a debate with people who disagree, you quickly find out who you can have a healthy discussion with and who is so entrenched in their views that there is no point wasting your time and energy. The confidence that I have developed through Facebook and Twitter gave me the belief and confidence to start my blog.

I’m not naïve enough to believe that I’m always right, I enjoy being presented with opposing points of view that challenge my point of view and I’m happy to admit when I’m wrong.

I mentioned that social media has given me a voice and the confidence to make it heard but it has also given me the confidence to break out of the social media bubble and to start to campaign for different politicians and causes. I am a trustee for a fantastic local charity JpcCommunityFarm. This came about through getting in touch with the people behind the charity through social media first and sharing my passion, knowledge and experience. I would never have had the confidence to do this face to face or in a group. I would immediately believe that there would be someone who would be better than me.

For the past 4 weeks I have given up a couple of hours on a Saturday morning to speak to people in local towns about Brexit and to try and get support for a second referendum. It’s been interesting and there are some people who are not afraid to voice their opinion but on the whole there has been lots of good discussions and it’s good to be with like minded people. In a couple of weeks I’m planning to go to London to march alongside many other people who believe strongly in remaining in the EU. It’s something that feels scary and exciting at the same time – I’ll let you know how it goes!

Has social media led to you getting more involved with particular causes and groups? Let me know x

Strength

How strong would you say you are? I’m not talking about physical health, how much you can lift, how far you can run, how many push-ups you can do. I’m taking emotional strength, bravery, resilience.

I’m typing this at the RVI hospital in Newcastle. I’m with my step-daughter who is waiting to go for her umpteenth scan. She has a very rare bone condition called Fibrous Dysplasia. It’s basically a benign growth which attaches itself to bones. This one happens to be on her skull and near her brain so she needs a lot of hospital appointments and monitoring to make sure that Mildred (the name she has given her bump) doesn’t grow and that Mildred doesn’t get any brothers or sisters!

I’ve just asked Rachel if she would class herself as brave. She laughed and gave an immediate no. If bravery is classed as how well you can cope with spiders, or strange noises or being alone in the house or many, many other things then she probably has a point – she’s a wuss!! I then asked her if she would describe herself as strong. Her answer was just as emphatic – a yes,  followed by “I never used to be”. It’s true I have seen her develop an inner strength and resilience that despite living in pretty much constant pain has got her through her GCSE’s and starting A-levels. She has just started driving lessons and is planning the next important stage of her life. She decided a while ago that Mildred wasn’t going to beat her or stop her or slow her down. Sure she has bad days but she is strong, very strong.

I’m surrounded today by strong people. In this hospital people will receive news that will turn their lives upside down, news that means their lives will never be the same again. I’m sure from somewhere they will find the strength to process this news and to start to plan their recovery and rehabilitation. It may not happen straight away but it will come. Their families and loved ones will develop a strength and resilience to support them and be there in an hour of need. On a more positive note some people will receive the news that their struggle is over and that the strength they have develop has helped them back to health. The other very string people in this building are the doctors, nurses, hospital staff who provide comfort, reassurance and hope. Sometimes this just comes from a smile, a funny story, a joke.

In my life, I’ve had to find the strength to deal with my own physical and mental problems. I’ve also had to find the resilience to deal with setbacks, with bad news and then find the resilience and strength to be able to help others. If I can find inner strength, anyone can. I truly believe that we all possess an amazing amount of inner strength and sometimes it’s the strongest who get challenged the most.

If you’re sat there and you don’t think you’re strong, if you don’t think you can cope believe me you can and you will find a way. In many ways I hope you don’t have to find out just how strong and resilient you truly are! x 


Nothing, Zilch, Nada

This week I’ve got nothing to write about. Believe you and me I wanted to be a bit more inspirational and inspiring than that but it aint happening this week!

Don’t worry I’m not in a bad place, stressed out or struggling to focus, quite the opposite really. I like to write my blog at the same time each week so in the couple of days leading up to it I start to think about subjects I want to write about and start planning things in my head. It got to today and there was still no flashes of inspiration, even taking the dog for a walk which usually helps failed to deliver any meaningful ideas.

So I thought  – sod it, what’s the worst that’s going to happen if I don’t write anything this week? My blog will still be there and I’d rather not write something just for the sake of it.

Once I reached this conclusion, I instantly felt calmer, more relaxed, I wasn’t panicking about getting my thoughts down. AA Milne was right. There is a value in doing nothing – I’m an expert in it and today served as a reminder! So much so that it inspired me to write about nothing!

If something is causing you too much stress and anxiety, take a break, move away, do something that helps you switch off. Or literally – do nothing. Find a quiet space, chill, and empty your thoughts. Think about when you’re on holiday, how good does it feel to switch off, lie on a beach and chill. Take mini holiday’s in your mind and see where it takes you.

Hopefully next week I’ll be able to write about something but today I’m pleased to be able to offer you nothing! x

Feeling the Love

Ok – I’m going to go there this week. Do you ever find yourself pondering about the meaning of life and wonder, what’s this all about?

I used to, until the penny dropped a few years ago and nothing has happened to shake my belief. It’s love – it’s got to be, hasn’t it? For me, a life without love has very little meaning. Once you open yourself up to receiving love and being able to give it unconditionally, your life starts to have more purpose, you begin to realise what we’re all here for, to use this wonderful gift for good, to make things better for those around us, to help us get through some challenging times and to help us grow.

Love can come from many sources, your soul mate, your family, your best mate, your pet. In fact animals are the best at giving and receiving love. I know that it doesn’t matter what kind of day I’ve had my dopey dog will be there at the door, wagging his tail and so pleased to see me! All he asks for in return is to be fed, walked and have a bit of a fuss and attention now and then!

I admit love can be scary, making that commitment and saying the words takes a huge amount of courage and sometimes it isn’t always requited. Believe me it becomes easier as you get older and you learn from mistakes and experiences. In some ways it’s a good thing that love can be scary. Love can be so powerful that saying it without commitment or meaning dilutes the impact both for yourself and for the person receiving.

When I was physically and mentally ill in 2017 it was messages and examples of love that were as powerful as any medication. Knowing that I had people who loved me, who wanted me to get better and knowing that the people I loved needed me was massive and got me through.

So we’re now into February, the month of love. If you’re in that amazing place where you have a soul mate, (and again, it doesn’t have to be human) make sure they know how you feel, say the words. Life will instantly become a little bit better – I promise! If you’re not in that place yet, enjoy the journey, live and learn. The destination is beautiful!

As usual, I would love to hear your thoughts x

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