In this age of social media, sharing one’s life is the new normal. For me, however, sharing my life with those who have not walked in my shoes is an emotional challenge. My life is nothing adventurous, nor do I hold celebrity status, but I have found in the past two years that sharing details about my life has assisted others to keep moving forward, or to consider a different perspective. So, I challenge myself to share more and more; to expose my emotion for the world to see. Previously, I would rarely share this information with anyone, as it is sad and beyond most people’s ability to relate to.
It’s not their fault, it’s just that my situation is incomprehensible for most, unless you live it for a little while. I don’t expect any sympathy or special treatment from you. All I want is to be treated like an individual woman with dreams and aspirations, not to be held up on some pedestal for what others think is an unbelievable situation. But when I do share, it is evident from people’s surprised facial expressions or comments on blogs and posts that quickly dissolve to shock and sympathy, that thinking my life is normal is very naive of me and even limits my opportunity to grow.
My story is centred around by daughter, Abbey, and all of the adventures that have sprung from her time with me. This story is about how the roles we play in our daily lives, if not viewed holistically, can affect our growth, our health our family, and even our potential.
Abbey’s early life was really boring. She was born in Perth, Western Australia in June 2005 after a trouble-free pregnancy and without any problems. She nursed easily and was a beautiful baby. Abbey was my first child, and the first 4 to 6 months were extremely easy. Like so many new mums, I was sure I had the perfect baby. The uncertain and exciting role of being a mum had begun.
When she was 6 months old, I noticed Abbey having the occasional strange ‘startle’ that lasted a few seconds. It was nothing too weird or alarming; her dad and I thought it was a result of her strabismus (crossed eyes), which would also explain her slower motor skill development. It would all be fixed with a bit of surgery, which was planned for a few months’ time and then all would be normal for our angel.
As it turns out, February 2006, was to be the last time we held such bright optimism. I was interstate at a conference just outside of Sydney, Australia with the now-8-month-old Abbey and my husband. This was also our first family ‘holiday’, though I was spending each day at the conference and planning out the next stages of my career. I was 6 months away from finishing my PhD, so my supervisors and close mentors were preparing me for the next steps. Job offers were starting to come in: it was a heady situation to be in. My husband was already on his career path to be an airline pilot and so this was my opportunity to move from ‘student’ to ‘professional’, while enjoying a new city with my hubby and baby girl.
Then it happened in a single, terrifying moment. After the first conference day, in our little hotel room a street back from the beach in Manly, Abbey had her first recognisable seizure. All of a sudden, nothing but my girl’s health and wellbeing mattered. This was something else and life was never going to be the same.
The life-changing event
That week in Sydney with Abbey and my husband is a mixture of vivid memories and hazy travels from one doctor to another, one test to another, one hospital to another, discussing a wildly unreal new reality. I clearly remember the first seizure and the gut wrenching fear that gripped me. I remember calling for James and then my memory of events goes blank. I have sporadic memories of waiting on the curb for a taxi as the ambulance was going to take too long, the barrage of questions from nurses and doctors in the emergency department, the three days in hospital, the lifetime that played out in my mind in mere hours.
This situation was all the more unsettling as we were far from home. We lived on Australia’s west coast, kissed by the Indian Ocean and here we were in a hospital overlooking the Pacific Ocean on the other side of the country. Our nearest family was a continent away. My university supervisors and friends from the conference were supportive beyond belief, but we were still very alone. We needed family support and for that we needed to fly back to our home in Perth. Unfortunately for us, with the doctors stumped by the cause of the worsening seizures, the advice was to avoid travel until the seizures stopped occurring. We could see, however, that such a hopeful plan would mean we’d never get back home. We boarded a flight to Perth and hadn’t been home two hours when we had to take our little Abbey to the emergency department once more. This time, we spent three weeks in hospital and left knowing no more about the cause of her seizures than when we had left Sydney weeks before. Doctors tried to gently prepare us for the possibility of losing our baby girl and although we were back in our home town, nothing could be more isolating for two young, first-time parents.
It was not to be so
Several years after those events, following numerous tests, an interstate move and a new paediatric neurologist who, by incredible chance, treated another girl with very similar issues, we learned that Abbey has a mutation of the CDKL5 gene. To this day, the seizures are continuous and life-threatening and she requires the care and attention needed of a 9-month-old baby. At present, there are about 2000 children in the world with this condition, which is yet to be given a name beyond the specific gene responsible. There is little to no research on how to improve the lives of the children affected and the focus is mainly on quality of life care. There’s no cure, and no way to improve their lot. Abbey has trialled at least 19 medications, plus some obscure stuff such as medical marijuana. The condition causes not only seizures but in Abbey, it has also caused, or played out alongside in some way or another, cerebral palsy, severe allergies, gut issues, early onset puberty, vision impairment, immune-deficiency and a host of other issues. It’s all due to one little protein that is not developed to ensure the rest of the body does the right thing. One tiny little protein, poorly copied, and all this.
Ultimately, it is knowledge that the average lifespan of a child with this type of CDKL5 mutation is 12 years that weighs heaviest of all.
We just ‘celebrated’ Abbey’s 12th birthday and our whole future is one of grave uncertainty. So what does that leave one with? Where to now? What future can we plan for? The answer is simply that we don’t know. We know there is no cure for Abbey during her lifetime. We help by trialing different therapies, answering surveys and talking to other parents whose child has been diagnosed with the same condition. Abbey has taught us that life is precious and that the small things are most important. She’s not in pain and isn’t an ‘able’ child in a disabled body. When she’s happy, she laughs and we tickle and cuddle. When she’s upset, we do our best to ease her troubles. She gives us perspective on the important things in a parent’s life. And we do our best to share that knowledge.
Since that horrifying day in 2006, I’ve finished my Doctorate in Philosophy, albeit taking an extra three years in-between therapy appointments and doctor visits. During those three years, it became clear I could not pursue my original career goals to become an international diplomat, an academic or researcher.
I tried my hand at accounting and teaching but none of these career paths could be feasibly pursued full-time around the needs of Abbey and her care. I even went to work at Customs for about two years but had to leave due to lack of carers to watch Abbey while James also pursued his career.
I tried. I really did. However, it was impossible to find a job that matched my qualifications that would also allow me to meet the needs of my girl. I was in desperate need to define myself; to define a role I could fit into. Although I would mourn the loss of my career, my child had to come first. Don’t get me wrong, I am a dedicated and loving full-time carer to Abbey. However, and this can be hard to admit, there are times that the rewards from the role as carer aren’t enough. Particularly when I look back at my lost career and how close I was to starting that journey. My new world of constant therapy appointments, doctor visits, interviews, school requirements and paperwork leaves me feeling like I’m not moving forward, but rather reacting to each crisis in turn and in doing so, I remain ultimately stuck in the “sameness” of each day.
Of course, in between all of this, ‘regular life’ continued and I have had 3 very handsome boys, moved interstate and built a house. Throw in a battle with severe depression and anxiety at one stage, for what should be obvious reasons. I don’t share that part so you will feel sorry for me; instead celebrate with me as I celebrate it. My dreams were crushed, yet from the ashes of that sorrow I have been free to craft a new direction; one which speaks to and for all of me. I have been able to define and control my own role in this life.
The next adventure
Five years ago, all of my loss came to a head and began to overwhelm me. I knew I had to do something that would give me purpose beyond Abbey’s care, build my confidence and provide a financial future for her. To the dismay of family and friends, and on occasion against their advice, I started my own small business. The decision to do so did not come easily. I agonised over it for months, not knowing if it would ‘fit’ well with my caring role and my parenting role, and ultimately be a waste of money and time.
The idea behind the business came about when one of my three boys needed larger cloth nappies, and I was looking online for some options. I had used cloth nappies since birth for all of my four children, so I was well experienced in their use and care. When I began to search for a solution for him I was surprised that the industry had exploded in the 7-odd years since I bought my first stash of cloth nappies. I felt parents needed a way to trial a range of nappies whilst getting honest support on a solution for their specific family and economic needs. We named the business Apikali, which was the way some Fijian locals pronounced Abbey’s full name when we took our last decent holiday in 2009.
The original idea quickly developed into a small business retailing cloth nappies to parents. The cloth nappy industry is very competitive with many suppliers and retailers. One could argue the market is indeed saturated. With this in mind I ensured my business had a point of difference; this being that we were the only supplier of special needs nappies in the industry. I also built a blog around providing clear, easy to access and understandable information on the use, choice and care of cloth nappies. Within two years, Apikali, had met our five-year goals of revenue and store composition, and we were able to use the profits to cover the cost of petrol and clothing for Abbey. I had found a career I could excel at, whilst caring full time for Abbey. I could manage this new role along with the others I had. I was carving out my niche.
Now, I am distributing several Canadian/US brands and source products that are not readily available in Australia. I am building the persona of the Cloth Nappy Doctor and the profile of cloth nappies in Australia. Into the future I will be moving into the special needs area with the development of reusable incontinence aids.
Being more than a mum or a business owner
I’m proud of what I have achieved so far. To this day, it has not been easy as I manage time commitments and demands of all the roles I play day-to-day. Add into that mix, the duties of wife and a mother to three school-age boys. I certainly know I am alive (though often feel dead tired) and some days, I am not at my best. Owning a business has been overwhelming at times when managing the carer role for Abbey. The two worlds can collide. The demands of Abbey’s health, doctor appointments, therapists, paperwork and phone calls are constant and never ending. I must be available to manage these. The carer role always wins when there is a conflict, but it’s a joy to concentrate on the business that is solely for my own personal wellbeing and enjoyment in the short-term, knowing it will assist Abbey in the long-term.
I am defined by so many roles as mum, carer, business owner and wife. But within those roles there are so many titles such as advocate, marketer, accountant, best friend and taxi driver. I cannot separate the roles of mum, carer or business owner. There are times I have done cloth nappy consults while in hospital with Abbey. I work on my phone while waiting in doctor’s surgeries. All of these titles and roles, make up who I am, they are defined by me.
It is only in sharing my story, that I have finally realised that gravity of this statement. I define what sort of mum, carer or business owner I will be. All of these roles intertwine and can never be exclusive. I cannot be three separate people for these roles, even though I have been trying very hard to be. I no longer bring one third of myself to a situation, I bring my whole self. It’s very powerful and fulfilling.
Now that I’m trying to bring my whole self to every moment, and it’s hard to do when I have operated differently for so long, I can now enjoy the following:
– I only need to concentrate on the moment that I am with Abbey, no matter what I am doing. I do not need to find special periods of time to have loving moments with her. Packing orders while she sleeps beside me after a seizure, listening to Adele, is bringing peace to intense moments.
– I can dedicate myself to her joy more easily, as I am no longer separated in purpose. As her life is likely to be shorter than others, and her ability to engage with the normal expectations of society, such as getting a job and having a family, are not possible for Abbey, her goals are simpler with an emphasis on enjoyment. We as a family focus on quality time together.
– There is a deeper connection with those who assist me in providing the best for Abbey. Those who work in special needs share our desire to allow Abbey, and all special needs children and families, to capture the most from life, at their level of ability and needs. Now that I come to them as a whole person, sharing our highs and lows, there is a closer relationship, and it is endlessly rewarding.
– Finally, embracing all of me means every day is different. I never know what I am in for. Never. It keeps me on my toes and in the moment. No longer do I need to prepare for so many different roles, I only need to prepare myself.
Where to next?
Bringing together all of my roles gives me the confidence to undertake another adventure: to start fully sharing my life as a special needs mum who owns a business, runs a blog and is hoping to take up watercolour painting again. I hope to improve the understanding of the lives and needs of such mums, and to inspire other mothers to try something new. I enjoy sharing my life and experience with our community, while also assisting them on their parenting journey.
There are so many roles we undertake as women, no matter what our circumstances. But if we separate ourselves and not allow the emotion to guide us on our journey, life is not as rich or complete. In merging all of my roles together as Abbey’s carer, mum and business owner, these worlds begin to intertwine and allow me to ‘just be me’. I encourage you to look at how you separate yourself to manage different areas of your life, and then try to allow yourself to be whole for whatever purpose you may pursue.
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