Written by Jess
" I'm thankful for my struggle because without it I wouldn't of stumbled across my strength"
What does it mean to be a survivor and not a victim? When life throws you a curveball? My name is Jess, mamma of four, burn survivor, and amputee. This is my story of hope as I struggled through endless surgeries and navigated a life being a double amputee a life were I decided to stand up to victimhood and be a survivor my hope is to inspire others to do the same.
It's twin girls!! My life path began on that hot summers day in June 1985 my mum often talks of the day my sister and I were born, the joy, happiness, and instant love she had for us both but in stark contrast my path through life changed direction on that cold winters day in February 1986, when a accidental house fire tore through my family home, my new pathway through life had begun.
I was just 7 months old, whilst being airlifted to hospital I had lost my life several times my mum repeatedly said her goodbyes but I refused to give in which in many ways is still a quality that shines through within me today my twin sister who lay with me as we napped that day on opposite ends of the sofa was rescued first she sustained 3rd degree burns to her feet and parts of her face. The fire left me with 65% burns to my body and took away both my legs, fingers, ear, hair and part of my mouth those are the things that I lost but I gained so much more I was given a life!
My injuries were so widespread across my body that they struggled to find skin to graft. They managed to take some from my back but the majority of grafts were taken from my twin sister. I learned that I stayed in hospital for over 5 months hooked up to a ventilator that had to specially made to fit my tiny frail body. Ironicly the amazing doctor who made the ventilator was called Dr die!! But me, I didn't give up I underwent the first of over at least 80 operations almost instantly to give me the best chance of survival. When I came out of intensive care I probably had about three operations a week for another 3 months afterwards.
I healed amazingly at home I was on a pretty hardcore timetable to help me achieve the things I needed to do, spending hours a day doing physiotherapy and other treatments provided by the occupational therapy service. Incredibly I went on to do everything an average baby would be doing hitting all milestones. At the age of just one I stood up straight on my stumps for the first time not on any kind of prosthetic leg they were aids to help me gain balance before I was fitted for a real pair of legs the only way to describe them is if you imagine flower pots they were just like that! It wasn't long though before I was running around on my first pair of prosthetic legs. I had no problems at all keeping up with my siblings and giving my mum the run around!
Growing up it never really occurred to me that I should have advantages and exceptions, it never occurred to me I was brave, heroic or inspirational even when I won a national child of courage award in 1996 I didn't really understand why, of course I do now and take pride in it. I was treated just the same as my siblings very few expectations were made even chores! The only understandable expeption was having a bedroom built downstairs. I just lived a normal life learning to do things in a different ways. I was fiercely independent and did everything my siblings and friends did, if they went skateboarding so did I, I would just roll along using my hands. I rode a specially adapted bike with my hands too I. I would always find a way to overcome obstacles, my biggest achievement was my swimming. When I first got introduced to the water I was in blind panic, I asked my therapist but what if I sink she said just imagine your a fish and threw me in and that's what I did I swam like a fish picking up some gold medals along the way! I didn't have legs but I overcame obstacles by walking on my hands and climbing on to things even trees, which on one occasion led to some stern words from my mother when she received a knock on the door from a policeman with me in one hand and a soaking wet pair of legs in the other! Long story short my legs gave way and flew off in to the stream whilst I climbed a tree, my friends thought it would be a good idea to hang them from a tree to dry you can only imagine the horror and confused look on the policeman's face when he looked up to see a pair of legs hanging from the tree I was rescued along with my legs, my friends and siblings thought it was hilarious they were always playing tricks on me, cruel but funny tricks to name a few, playing knock knock and leaving me stranded in my chair as the unsespecting culprit, my siblings once put me in a miniature suitcase and left me in the top of the wardrobe whilst they ate ice cream!
It was all I'm fun and jest in fact I was much loved and my siblings were my biggest protectors, I attended normal mainstream schools both infant primary and secondary were I passed all my gsces and were I met some of my friends for life. My school friends didn't see me as different really if anything they made sure I was to included in everything, I remember being adament at taking part in the school sports day in primary school and competed against some of the fastest I'm sure I won an obstacle course race by miles against the fastest in the school! That was me always, so fiercely independent at age 8 an amazing charity organisation took me on a lifetime trip to Austria were I learnt to ski it took me the whole two weeks to master but I did it and before long was whizzing down the slopes! I never once thought I wouldn't.
I carried this can do attitude in to my adulthood. The first thing I did once I turned 17 was learn to drive! The car is specially adapted with hand controls, this gave me the independence I needed to get around I started a job working with disabled young adults helping others like me gain all important life skills to live independently was the most rewarding job ever. Once I started earning a wage I was able to move in to my own flat.
So that was it I completed every physical challenge I thought possible I was working driving and living on my own with my own independence and yet just one year later someone came along to show me that there were more challenges to overcome and quickly. Her name is Tyler May and she is the first of my four children born in June 2003. I had always known I wanted to be a mum from a young age I knew it wouldn't come without challenges and boy were they dished out like penny sweets! All four of my pregnancies were difficult towards the end my wheelchair was my saving grace my scars would stretch so tight with my expanding bump it felt like I was in a vice being stretched beyond limits its funny how you almost forget these things ever happened the minute that baby is put in your arms and you don't remember or feel anything but love so whilst debating nursery colours I was on the other hand trying to sought solutions to make life that little bit easier.
I remember feeling totally bewildered staring down at her thinking what do I do now, it was so scary but I learned to adapt there was no choice in the matter this child depended on me she didn't care I didn't have any legs she wanted me to feed her, carry her, comfort her and play with her. Before long I found a rhythm, I would wheel her around in a little basket when I didn't have my legs on and I created a little changing station on the floor the stair lift I had at the time came in handy I would strap her in a baby sling and spend half an hour just going up and down it surprisingly every time put her to sleep! Things became much easier when my third baby came along we moved in to our new disabled adapted bungalow with all fancy mod cons all the units are motorrized which means I could change nappies and prep bottles all at my level. Growing up the kids have never once asked me why I'm different to them I was just there mum who did everything a mummy would do they didn't really know any different.
Every day is an adventure some days I'm even a horse! Being small has great advantages haha, we go bike riding, swimming, have adventures in the woods or spend days on the beach. Some aspects of parenting is a bit more challenging for instance pushing a pram, that's easy but hanging on to a pram for deer life going down hills is a different story! Expecially when the force of gravity has other ideas, let's just say my arm muccles are super strong! On big days out I will take out my mobility scooter so they never miss out this often comes in handy if one becomes tired and wants to hitch a ride! Another challenge I faced is when they got to toddler age and began to get a bit more adventurous which is exactly the age my youngest Ember is at now she's just so cheeky and full of life and is exploring and testing boundaries, the older three learned quite quickly my limitations and that I wasn't always able to run as fast as them Ember seems to have other ideas just now its a tricky age, i'm eager for her to learn to walk alongside me, but for obvious reasons with total obedience whilst still being able to be free so we can enjoy outside and enjoy more easily by ourselves. The mischievous looks she often gives me though suggests this may be wishful thinking! Whatever challenges I Face though being a mother never outweighs the positives, my children are my inspiration.
People often ask me how I stay positive with having my disability well, for me I think it helped that I was such a young age when the accident happened. I just didn't know any other way whatever I learned to do I had to do it with two missing limbs. There are instances when I have to come up with different ways of doing things than most but that doesn't hinder my ability to try. I just find a way to do it my way. Going up and down the stairs takes me longer than most as I have to do one step at a time, I believe your disability only effects daily life if you allow it you have to take charge and allow yourself to live the life that you want not what you think you can can't do. I just live my life without limits and am not afraid to do things even flying myself around on the wings of an aeroplane in the name of charity .
I sometimes think how my life would be without my disability, I'm convinced life would be different but am I convinced my life would be better? No, everybody faces challenges in life, my disability has been and is my main challenge but disability has taught me the most about life I have had bad experiences. Yes for instance my first ever job interview I was so nervous it was only basic waitresing but I could instantly see the disgust in the lady's face the moment I met her, first of all she came out with some excuse about well what if you trip and fall whilst carrying food or hot drinks that would be dangerous ,a pretty pathetic excuse when there was always an option of using a tea trolly, she finally admitted to the fact customer's might be scared of the way I look and turned me away. Then there was the time when I was around 18 sat in a cafe minding my own business, this elderly gentleman came up to me and said how sorry he felt for me what a shame I looked the way I did (like someone chucked me in a bonfire his words) and that it's sad I probably would don't be able to lead a normal life I must face struggles with no legs expecially if I used a wheelchair, these experiences highlight negative attitudes and perceptions some people have about people with disabilities all be it a bit rude but perhaps he was only trying to tell me he recognises the challenges that disabled people may face, its not the worst thing but its also not fine either.
The positives always outweigh the negatives though and I can equally say I have had some of the greatest experiences I will never forget the Moroccon tour guide who insisted on carrying me up 5 flights of marble stairs so I could dine in the sunset taking in the wondrous sights of Morocco. Having a disability can make you more reliant on complete strangers and those closest to you, I find it particularly challenging being as strong willed as I am but on the other hand it stenghthens relationships and bonds that are unbreakable. His kindness will forever be etched in my heart. I'd probably say the thing I have learnt most as I have got older is to embrace every day and not take them for granted, life is for living sometimes I even joke about my disability and laugh about it with friends sometimes you need a little sense of humour at times.
I see it as, life doesn't need to completely stop if you have a disability if there's a will there's a way disability or no disability anything you want is in your reach I never let those who quietly whispered I couldn't stop me from reaching my dreams six years ago I completed a degree in humanities and now I'm halfway through a BA in psychology. I have taken a break but will be back to it soon, my dream is to become a counsellor I want to be able to assist people and help them overcome the challenges that they may face.
A quote that I love is " believe in yourself and all that you are khow that there is something greater inside you than any obstacle" this is something my deer fiance always says to me to believe in yourself. I am blessed to have him in my life he is the best father to our children he believes in me no matter what and understands me like no other accepts me for me flaws and all! I value his love and support so much he is my love my biggest comfort and greatest support. I am so lucky to be surrounded by so much love and support by my friends and family I am thankful to them all.
The biggest credit of all goes to my mother my biggest inspiration in life she is the person who taught me life has no limits, the person who believed in me in everything I did and stuck with me through thick and thin and countless hours of rehabilitation. Not only did she bring me up to belIeve anything in life is possible she raised me to be the person I am today and I could never thank her enough.
This is what I want for my children I want them to lead a life khow it's not what they can't do that matters its what they can do and that's all that matters I want them to have a can do attitude to truly live without impossibility one day I want to travel the world and climb a mountain there is no can't do about it, where there is a will there's a way! My son who has autism recently told me when he grows up he wants to design and build a theme park, my response to that was I hope I get free season passes, my second to youngest wants to be a firefighter and my eldest wants a profession in law Who are my or anyone in fact to tell them they may not achieve there dreams I have every faith that they will. Because that's what life's all about its living a life without limits reaching for the impossible taking in and never for taking for granted the life we have been given. Life changed for me on that fateful February day it changed for the better and to this day has no limits.
I appreciate this has been a long read and if you have made it to the end thank you! I hope to have inspired others with my story. If nothing else just to khow that the impossible is always possible never give up on your dreams ❤️