This is a topic that is hugely on my mind at the moment.
We, as a family, are learning to accept the fact that Ellis is now disabled for the rest of his life.
Despite beating the cancer, the heart failure and the Covid, this is the one we are left with.
To look at, he looks ‘normal’. His hair is back, his teenage attitude is back 😜 but his bones are not.
He is bionic.
I am now a Mum of a child with a disability.
We have never had the time to properly digest it until recently.
We have the blue badge, the DLA, the risk assessments and the hopeful EHCP (fingers crossed) , but we’ve still never seen it.
While we all want Ellis to have his life back, we are coming to terms with the fact that it’s not the same as it was.
He will need extra support his whole life, not just as a child.
His leg length discrepancy is much more noticeable now, with his limp being more prominent. He has to prepare his leg a few minutes before standing each time, because it goes stiff and he can’t move it.
We are always conscious of hills when we go for walks or unsteady ground or where the next bench is.
His friends have been incredible, allowing him to slot right back into their group like nothings happened and I genuinely can’t thank them enough. This has been everything to us since going back to school ❤️
But we need to now start planning going forward for having a child with a life long disability.
A simple holiday takes so much planning.
From travel insurance, to disability friendly hotels. Days out ruling out things he used to love and the constantly having to explain to people that no, he can’t do trampolining or go ape. Actually, there are lots that he can’t do and that’s forever.
Worrying about what could go wrong and carrying out virtual risk assessments in your head every single time we go out.
But not as exhausting as denying anything is wrong and picking up the pieces when it all falls apart.
So we are learning.
Ellis is learning.
And I continue to be in awe of him every single day ❤️❤️❤️
So this week I have been a bit quiet in the world of social media. I’m still alive, I’m not in an alcohol induced coma, don’t worry. I’ve been a real life grown up this week.
I have been concentrating and working hard on something that means a lot to me.
When Ellis was discharged from intensive care at Great Ormond Street and back to our local hospital, we were picked up by two lovely men from St John Ambulance, because Covid-19 meant that the NHS has been stretched to its limit. The two men were amazing. They put us both at ease, one was even commenting on how cool Ellis’ scar is and making him laugh. They were genuinely nice people.
These men were volunteers. They did what they did because they wanted to. That blew me away.
In a worldwide pandemic, where most peoples first thought is to run and hide, these men had voluntarily put themselves on the front line.
It made me think about how unique my situation was. I had been in hospitals during the whole pandemic, I know the ins and outs of the hospitals Covid-19 procedures and I’ve lived and breathed a Covid-19 positive environment.
Just like Cancer, Covid-19 doesn’t scare me.
I could help.
With that along with my vastly growing skill set of mental health nursing and counselling I genuinely think it would be something I could use to give back.
So last month I signed up to enquire about volunteering for them.
And today, after a month of interviews, inductions and training courses I’ve done it. I have qualified as a SJA First Aider ❤️
Without Covid-19 I would be getting ready to go to events to provide first aid with an amazing team, but they have all stopped. SJA volunteers are being called on in hospitals, care homes, blood donation facilities…. anywhere help is needed. This is where I will be going.
I have had the most surreal time getting to this point. I have made some amazing new friends who have kept me sane during some surreal moments 😂 and reassured me on days like today where I have been terrified of failing.
I have ordered my uniform, ready for me to get stuck in.
2020 hasn’t all been shit.
It’s been the year where I lost everything, but gained so much more.
A year where possibly, I might have got a bit carried away with filling up my spare time…. working full time, completing my counselling course and now being a SJA First Aider.
But hey, it wouldn’t be my life if it wasn’t a tad bit excessive and out of the ordinary 😂
I’m happy. Happier than I’ve been in 9 long months. I’ve used the dark days and turned them into something amazing.
I am proud of myself and I’m not ashamed to say it.
Something I have been told lately by someone close to me.
Well of course I have, wouldn’t anyone?
Having faced my worst fears as a parent head on and still coming out the other side is pretty life changing. From that dark day in December when Ellis was first diagnosed to now- nearly at the end of his treatment has provided me with a huge shift in mentality.
Seeing what I have seen, witnessing my boy so close to death right in front of my nose will have a lasting impact forever. The way I process it is, if the worst had happened, if he had died that day in PICU, right at that moment I couldn’t have been anymore scared. I had reached my limit.
This was my 10 moment. The top of my scale.
When you have a life changing illness or condition, you get used to rating your fears and pain on the scale of 1-10. For questionnaires, for yourself, for doctors. Even in my darkest days of my treatment, I never gave a score of higher than a 9. The day I scored 9, was the day I heard the word “You have cancer”. I didn’t give it that score because I was scared for me, I gave it that score because I was scared for my babies. I was terrified I would die and they would grow up without me. I wasn’t done teaching them about the world, shaping them into resilient little people or telling them I loved them. I wasn’t ready. All that pain and I still only scored it a 9.
I was saving my 10, hoping I would never have to use it. But that day, I did. I didn’t realise until that day just how different 10 was from 9. It was a million miles away.
So from here, it has to get better. I have faced my 10 and I am still here. I am still me, just with a different outlook on life. I am a work in progress, evolving and learning. And I love it.
It has got me thinking about blame and responsibility. Two very different things, but too often treated the same.
The blame for this year lied with Ellis’ cancer. But it is not the cancer’s responsibility to determine how I react to it and how I move forward. That responsibility lies with me.
For the past month or so I have been putting lots of effort into making sure I am mentally balanced. I have been re reading an old favourite book of mine called ‘The Subtle Art of Not Giving a F**k’ It was recommended to me a few years ago from an amazing friend who always has my back. 2-3am when I cant sleep, I know I can always talk to him. We studied Mental Health together 7 years ago, so he knew me just before my own diagnosis. There are not many people who I can truly say are my friend for life, but he is. And I am eternally grateful to him for being a friend and for understanding me on a level not many people do.
In the book, the author, Mark Manson, talk a lot about how life is easier when you actually learn not to give a f**k. It’s so true. Not necessarily about peoples opinion of you, but how you view the world, why you do what you do and generally makes you question yourself. I love that. With me, it has taught me that I am in control of my life, the situation isn’t. Things happen, sometimes good, sometimes bad, but ultimately I am in charge of how I chose to feel.
And this year, I choose happy. Despite everything that has happened, despite the fears of what still may happen, I still chose happy.
Does this mean I don’t care? No.
Does this mean I’m not scared? Absolutely not. I still have days where I cry because I am scared or days I can’t eat. It is still very real and current for me.
I am just not letting that define my life. They are parts of my life that unfortunately now will always be there. Every new pain, every new lump and bump with me, Ellis or any of the kids will always be a challenge for me, but I recognise that and accept it for what it is. What is isn’t is something that stops me from achieving my goals, from reaching for the stars and from fulfilling my dreams.
Life the way I see it, is like a game of poker.
You can be dealt the worst hand in the game, but still go on to win. You can beat the best of hands purely based on your attitude, your choice and how much you are willing to risk.
It’s how you play the game. That’s the secret.
I can’t change what has happened this year, I can only learn from it. Out of something so horrendously difficult, I have gained a whole plethora of influential experiences, which I am using for personal growth.
Why are some of the nastiest words we hear from ourselves?
Self love is not about thinking you are better than anyone. It’s not even about thinking you are stunningly gorgeous. It’s accepting yourself for who you are.
My body is far from perfect and its taken me a long time to accept that actually, that’s ok. I have stretch marks, imperfections, a scar across my neck and definitely more chafe than thigh gap…(Because… cake)
But what this means is that it has carried 4 incredibly amazing children, it’s beaten cancer and survived some really dark times.
And I finally love it.
It makes me so sad to see people who are not happy in their own skin, people who avoid doing things they love because of they way they feel about themselves. People who are insecure about the very body that keeps them alive.
One small nasty comment years ago that has shaped your view of yourself or stuck in a relationship where it has become the norm to be put down and not appreciated. Hang ups you have about parts of your body you hate, because someone irrelevant once told you so out of spite. Parts of your body you wish her smaller, bigger, more toned, less toned……
It’s not about looking in the mirror and telling ourselves we are perfect. It’s about knowing that it doesn’t even matter that we are not. No one is. Ok well apart from Phillip Schofield, but I mean he is god.
Perfect is manufactured from magazines and media. Naturally beautiful girls being photoshopped within an inch of their lives to become more appealing to this weird ideal that everyone so badly craves. Everyone is worth more than that.
I am lucky enough to know some of the most kindest people, who will pour kindness into others, but will be hard on themselves.
If this is you, stop. Turn your kind words back onto yourself and listen to them.
The things you love about your partner, or the things you find endearing in the person you like- you have these qualities in you, too. The things you wish you were, you already are them and more.
Why is life somehow ruled by the size of someone’s arms or the length of their legs?
Life is about fun, adventure, meeting new people and connecting in ways you never dreamed possible. It’s about laughing so hard until your cheeks hurt. It’s about those moments that take your breath away and also the hard moments that make you who you are.
Life is like a book.
Our past is our story and our bodies are the illustrations.