Hello I’m Sera and I help change the lives of mothers raising children with CP claim back their identity, health and happiness allowing them to lead a life they deserve.
I’ve been there. I understand first-hand the challenges of finding out your child has cerebral palsy.
- I was devastated, I felt like my world collapsed
- I felt angry: “why me?”, “why my child?” “What did I do wrong?”
- My search and desperation for information, answers and help was totally overwhelming
- I felt like I was grieving the child, family life, and happiness I should have had
- I felt lost, alone and trapped
Those early years of raising a child with C P plunged me into a world that felt completely alien, a different spoken language and trying to cope with the 24/7 challenges of my child can really take its toll…
- My self-confidence hit rock bottom
- I lost all sense of hope and happiness
- I became bitter and angry with the world
- I felt trapped in the endless chores and huge responsibilities
- I felt helpless and at the mercy of strangers and professionals making decisions for my child
- I become a shadow of my former self, to the point I barely recognise myself staring back in the mirror
It’s not easy to summarise your life story in a few pages, but I want to share my journey with you, because if you’re here reading this, the chances are you are also a parent who is on the journey of raising a disabled child, and I want to share mine with you…
In the beginning…
I started my career as a hairdresser working for John Frieda and loved my job so much so that it didn’t feel like work. Parallel to this, my now husband and I were looking for our first home. So at that time as much as I loved my job, it was time to move into the corporate world. I remember at the beginning thinking what am I doing here, working in an office. I felt I was losing my creative side stuck in a routine, conforming and not doing what came naturally to me. Yet as time went on I adapted and found I enjoyed training and developing people. So there started a 25-year career in this industry.
Got to be honest, life was pretty standard: got married, working full-time , enjoyed travelling and exploring different cultures.
The big news…
I remember the time the news broke of Princess Diana’s passing, I found out I was pregnant with my daughter. That time will always have a double bitter sweet meaning for me. I must have done at least 4 pregnancy tests just to make sure. My mind went into overdrive planning, imagining life with a baby and us as parents. Who will she resemble? Will she be into sports or dance? I even imagined her own wedding and my husband walking her down the aisle. Crazy right? There was no doubt we were both over the moon. As the months passed I grew bigger and felt a deep protection over my tummy. I avoided anybody smoking, didn’t drink at all, although I don’t normally drink. Ate healthy apart from the cravings of sausage sandwiches and my weakness for Mars bars. Yes nobody tells you that once the baby is born the excess weight does not magically disappear!
But three months into my pregnancy, I started to bleed and was terrified, an ambulance was called and I was rushed to A&E, it was a weekend so not everything was available and I was told to return on Monday to have a scan. Waiting was the most terrifying time – had I lost my baby? No. I had lost her twin. I had no idea I was carrying twins, it was written in my notes, yet no one told me. I found out by reading my notes upside down – failed sac, it said. So naturally I asked. Apparently within the 1st trimester it normal to have a miscarriage. Unbeknown to me, this was my first experience of medics not being transparent and honest.
The new arrival…
I returned to work shortly after and life “carried on as usual”. Three days later then my predicted due date, my waters broke. I was surprisingly calm as I was getting ready to go to the hospital, yet as we arrived and I entered the delivery suite, I felt a wave of fear; I can’t do this and wanted to turn around and go home, forgetting all about giving birth. After a few hours, the midwife raised concerns and then all the alarms started to sound. Medics running, they were running because of me, my daughter had to be delivered now, she was in distress. I was wheeled into the OR my husband told to wait outside. I was alone, looking into the eyes of the anaesthetist and asking her if I was going to die, her eyes smiled and she comforted me saying no. I woke up, my husband by my side. I had no idea what happened or where I was. Did I have an operation? I was handed a picture of my daughter by the nurse, oh yes, I just had a baby – it didn’t feel like it.
Dismissing the birth as a horrible experience I got on with being mum, returning to work following maternity leave, joining baby groups and mixing with other mums who had babies similar in age.
A year had gone past and what was a joyous milestone turned into the worst time. At 13 months my daughter was diagnosed with Cerebral Palsy. My world fell apart in that split second. Hope and dreams for her future, for our future as a family were quashed in a heartbeat. I had no experience of disability. The images I googled were scary. I looked at my baby then looked at the screen – they have made a mistake and got her notes confused with another baby because the images did not resemble my baby. BUT even the specialist in Harley Street, who we went to for a second opinion from, agreed with the diagnosis.
So there I was thrown into a new world with a different spoken language having to learning pretty quickly how to not only take care of my daughter but understand what Cerebral Palsy was. I was soon consumed with medical appointments at different locations, always at each appointment understanding what will it take to help her. Medics were quick to say she would never walk; she may be slower cognitively to her peers. HOW did they know, I’m her mum and I knew this was not going to be the case.
I wasn’t prepared for the battles and arguments with the local education authority when selecting a school for her. They wanted her to go to a special needs school, I refused – I wanted her to attend mainstream. The endless amount of paperwork and form filling that came with having a disabled child meant as a parent you had to justify and prove everything you were writing. The orthotics, equipment, therapies and different specialist appointments all came with their code of language. If there was a qualification in this I would defiantly get a PhD. I got very knowledgeable very quickly and that’s why I was pushing back on their suggestions and comments. I became ruthless and a tyrant where the welfare of my daughter was concerned. I was still working and so became a different person at work, as I was in a non-disabled world, yet at home I was back in the disabled world.
I was hiding behind labels and personas I created to mask how I really felt; depressed, obsessed, angry, guilty, trapped. I didn’t want anyone to see how I really felt and it was my job to take care of my child – at any cost, even my own health. I was a frequent visitor at the GP surgery, I would say I cry all the time, I’ve got a disabled daughter. The GP would sign me off work. And so the cycle continued. Until that is one day I looked in the mirror and thought what am I doing, I’m stuck in this way of living which is not helping me and its certainly not helping my daughter. I made a discussion enough was enough and that day I took back responsibility for me. Through exercise I started to feel me again.
The big operation…
By chance I heard about an operation performed in America when talking with friends. They had just returned from the states and were blown away with his results. Within minutes I decided I wanted my daughter to have the same operation. Of course all the medics were against it and yet again I was on my own. I raised £75,000 in 6 months. I don’t know how I did it, I guess the ruthless person was still inside of me, it was hard physically and mentally yet there was no way she would miss having this operation due to money.
She was an ideal candidate and the prognosis was indeed lifechanging. Spending 2 months in America was one of the most frightening yet thrilling times of my life. Frightening as she was undergoing spinal surgery and I had made the decision for her to have this done. Thrilling because we lived in an apartment, it felt like we were locals. We cooked and had a car to drive to the stores and malls or go out as a family at weekends. Working came when we had to do therapy every day. It certainly wasn’t a holiday. Yet this was one of the best experiences of my life.
Life has a habit of sending me down different paths, paths I’m not always familiar with. This was the case one morning, it was a routine Monday morning and thoughts turned to my working day and how that looked. As soon as I stepped out of my bed and got up, I started walking sideways. I couldn’t walk in a straight line or down the stairs. My first reaction was I’m probably hungry. But after I ate, it still continued with tingling pains down my arm. A doctor was called and his first diagnosis was a stroke which was ruled out by further examination. I was referred to a specialist who concluded Vestibular disorder and Benign Paroxysmal Positional Vertigo (BPPV). What that means for me is over sensory simulation and the sudden sensation that you’re spinning or that the inside of your head is spinning. Scary and unpredictable.
Even though I had a treatment plan, seen a specialist and gaining a better understanding of the conditions through research, it was not enough and it was time to take full responsibility for me.
Firstly, I knew that the main triggers were stress and tiredness so I introduced meditation and made a commitment to practice this each morning. This cleared my mind, brought calmness before starting my day and felt during the 20 minutes of meditation I had a deep sleep. I had never experienced anything like this before. I also resumed exercise, not just the gym as before, but running. I was pleasantly surprised how running helped the fogginess in my head and because I had to use my eyes while also turning my head it was acting as therapy – who knew. I even completed my first ever 10k run. I live by these rituals everyday and whole heartily believed saved my life.
Today I still have these conditions in the background to living my life. It’s not something that takes centre stage as I live a life of purpose and reclaimed my identity in the process.
Looking back from where I am today, I am grateful for everything that has challenged me as it has taught me so many wonderful things. I certainly wouldn’t be a published author of two books and reach out helping women just like you. Loving what I do each and every day.
The way I led my life before is the complete opposite to today. I am not driven by negativity and emotion, shy away from confrontation simply because it is not what I want in my life as I know how if affects me internally. That’s not to say I am always positive, of course I feel negatively sometimes yet it is a feeling. I have the choice to either react and give in or to act differently. I choose to let things go that are not important to me.
Throughout my own personal journey I have had support and met individuals who elevated me to a whole new level and I’m continually learning everyday. Each morning is applying gratitude for all the things I am grateful for and each morning I spend 20 minutes meditating. I apply an open mindset and come from a place of non-judgement. To be honest I love the tranquillity my life has and a calmness. I do still self manage my vestibular and at times it is challenging yet I regularly remind myself that nothing is worth the decline of my health. Taking time to do the things I enjoy is important and exercising is essential to my wellbeing and enjoyment.
Since my father passed away a couple of years ago I hadn’t truly appreciated his heritage and have reconnected with my love of Italy again. As a child and growing up I now know I took this for granted and didn’t realise how fortunate I was. My family are so important to me and I am very blessed to have my family in Italy in my life.
Dana has begun a new chapter in her life. Despite the early years and throughout her schooling days, being pigeon holed in compartments, she has defined every single person who laughed at her dreams and goals.
Now in her third and final year studying Law in Canterbury University and living away from home independently, this was exactly what she had set her mind to do since school. University is a byproduct, for me as her mother, I wanted Dana to discover who she was as a young woman and she could only do that by going to University. It was one of the hardest things to do as a parent. Going from being totally dependant on us and not having friends or a social life at home. Yet it was the best thing we could do as a parent.
Dana is a strong, confident and self assured young woman who does not see herself as disabled. She will do what she wants, even if difficult, she will find a way. She lives her life to the fullest, has a strong circle of friends and enjoys her social life – a bit too much! She amazes me even to this day and will make a brilliant lawyer one day. She may even represent one of her many critics who doubted her capabilities. You never know!