My name is Anna and I am lucky enough to call myself a mum of two beautiful boys William, 3 and Mitchell, 1. I am your typical Melbourne mother with a strong love of coffee, wine, a brunch date and a sopt of shopping at my favourite hangout – Chadstone Shopping Centre. Our boys love trains, trucks, swimming, music and playing outside. William was diagnosed with Epilepsy at 18 months old and is my inspiration behind starting the online Instagram and Facebook community “More Than Epilepsy”.
I am hoping that by sharing our journey we can provide a positive space for support of others whose life has been touched by Epilepsy and a place of education for our broader community to break down the stigma that is still associated with Epilepsy.
Welcome Anna & William
Natalie: How did your journey begin with William? What was going on through your mind and heart during this time?
Anna: In November 2013 I finally got to hold my much longed for baby in my arms. William was perfect and for the first 15 months of his life, we had a healthy baby who was meeting all of his developmental milestones. I then returned to work, William began child care and our world as we knew it began to slowly crumble away. William became increasingly irritable and started to lose interest in things that he had previously loved such as reading books. His balance got increasingly worse and he started to fall over more and more.
My mother’s instinct was telling me something was wrong but I let multiple medical professionals convince me all was “normal” and William was just settling into his new life at child care. I so desperately wanted to believe everything was normal and I allowed these doctors to convince me that I was just an overprotective first-time mum. An inability to get help for my increasingly irritable baby was one of the worst parts of our journey.
Over this 3 month period, I would wake up with a headache and go to bed with a headache every single day through the constant stress and anxiety of not being able to help my child. Every night as I struggled to get William to sleep I would promise him tomorrow would be a better day and I was going to fix whatever was going wrong. Eventually, my mother’s instinct took over and I took William to Emergency at the Monash Children’s Hospital. It was one of the best decisions I have ever made. Once we got there the wonderful staff finally started to listen to my concerns and we got the help William so desperately needed.
Natalie: What is the name of the condition(s) that William has? Can you share with us a little more about it? How does it impact him? And you all?
Anna: William has Epilepsy. His full medical diagnosis is quite the mouthful, Epileptic Encephalopathy – Infantile Epileptic Spasms and Global Developmental Delay. When William was initially diagnosed he was experiencing up to 13 seizures every single day. He was unable to be left alone for even a second for fear of injury if a seizure happened when he was on his own. There are no words to convey the fear and anxiety that I felt as Williams mum during this time but there was no time to dwell on that as William needed everything I had to give so we just kept going. It took us about 12 months of trialling lots of different medication combinations, a high dose of steroids, the ketogenic diet and vitamins before we found the right mix of medication to stop the seizures.
We are now one of the lucky ones and have been seizure free for 18 months but we still battle Epilepsy on a daily basis. Epilepsy has affected all aspects of William’s development, his behaviour and his sleep – pretty much every aspect of his life. But now that we have stopped the seizures William is able to wake up every day and learn new things and that is the right kind of progress that we have been dreaming of!
One of my least favourite parts of our journey and one I still struggle with is the labels. I hate the labels that try to force William into a box before they even know who he is. There seems to be so much negativity associated with these labels and negativity is not something I want associating with our life. When I look at William I don’t see the labels. I see a sweet, caring, funny boy who loves to watch trains, play outside, drink cinos and sing songs. I want people to see the same William I see and not just the labels that have been forced upon him.
Natalie: What are some words to describe William? What do you love about William?
Anna: There are so many things that I love about William. I am your typical proud mother and could talk about my son all day! William’s Great Grandmother affectionately nicknamed our son Sweet William and the name couldn’t be more fitting. He is a sweet, sensitive and affectionate soul who loves a cuddle. William gives life 150% and can be very determined if he sets his mind to something.
“Nothing makes me happier than seeing my son smile and listening to his infectious laughter”
Natalie: What are your worries and wishes for William?
Anna: Unfortunately for me I am from a family of worries. Since becoming a mother and with the added pressures of William’s diagnosis I have clearly inherited this gene. My biggest worry for William is how he will find his place in society and find his tribe as he gets older. I worry if society and his peers will be able to appreciate all the wonderful things I see in William. I worry how I will be able to let him go about his life as independently as possible without me there to keep him safe and make sure he is understood.
My wishes for both of my sons are the same. William’s diagnosis does not change those wishes but I feel that it has simplified things for me and clarified what is truly important in life. I hope that my sons can find Acceptance, Love and Happiness in life. If they can both find these things then I feel like we will have succeeded as parents and I will not stop until we have achieved this.
Natalie: I’m passionate about the special needs and self-care connection. Raising a child with a medical condition can bring some big challenges, how do you cope? Are there any self-care practices that helped you on your journey? How do you get through the tough days?
Anna: Since becoming a mother I have found the self-care component exceptionally hard, particularly since Epilepsy has entered into our lives. Being a mother has consumed my life for the best part of the last four years and I only just feel like I am starting to carve out a little bit of time for my own self-care. I am making time to exercise 3-4 times a week including going for a swim at my local pool twice a week, an activity that I have always loved since my days competitive swimming as a teen. I am surprised just how much this simple change in my life has improved things. I have more energy, more patience and feel more positive which in turn has made me a much better mother.
When William was initially diagnosed I downloaded a free meditation app on my phone and did that every night before bed for a few months. I am not someone who has ever put a lot of weight in this before but I found it hugely beneficial. It helped me turn off my brain (which is not something I am good at) and shut out all the noise. I found even five minutes of this a day was enough to make a difference.
I have always found leaving both my sons but particularly William exceptionally difficult, even with their Dad. I now see just how important it is to make sure that we find our own time to breath in whatever way works for you.
“I also find an extra large coffee at the start of the day and an extra large glass of wine at the end of the day have huge healing properties in these times of stress, which really are most days in our house!”
Natalie: What advice would you give a mum who is beginning her journey after receiving her child’s diagnosis?
Anna: The start of the journey is hard, isolating and nothing that you ever thought would happen to you. Give yourself time to grieve but remember it is just a diagnosis, don’t let it define you. Your child is so much more than their diagnosis. No doubt you will hear a lot of negatives and it will be hard to find the positives to focus on but don’t stop looking because they are there. Never stop talking to people – if you feel the situation getting on top of you get help. Reach out to people and you may be surprised at how many people want to help you. Find the right medical and support team to help you through your journey, don’t just accept the first one you stumble across if they are not the right fit. Focus on the positives and don’t let the negatives take over your lives. You never know the strength you have until you have to fight for your child – you can do this!
Natalie: What are some lessons and blessings you have learnt since becoming William’s mum? How has it changed you as a person?
Anna: I feel like becoming William’s mum has really changed everything for me in ways I never expected and our diagnosis has a lot to do with that. It has changed me as a person. In order to be the mum that William needs I have had to change, but that change has only made me a better mum and human being.
One of the biggest things I have learnt is to really look past people’s differences. When William was diagnosed I was initially scared to tell people as I was worried they would treat him differently and that was the last thing I wanted. William is just like any other child. We are just like any other family. I don’t want the diagnosis to dictate how we are treated any more than it absolutely has to.
Another thing I have learnt is the true importance of not judging others. A lot of the time Epilepsy is an invisible illness but just because you can’t see the seizures doesn’t mean we are not fighting Epilepsy. You never know what someone is battling with behind closed doors so give people the benefit of the doubt and be kind always – it’s pretty simple really!
I have learnt to value the simple things in life and appreciate the good times. I have learnt to live in the now instead of always planning for the future. I have learnt that all I really need to make me happy is the health and happiness of the people I care about and there is no one I care more about than my family.
Natalie: Do you have a favourite quote, prayer, or piece of miracle inspiration that you would like to leave us with?
“I love the power of a positive quote! On our “More Than Epilepsy” Community we have a Monday Mantra every week to head into the week in a positive mindset. I have found the power of positivity makes all the difference on this journey and if I can hold onto that I am much happier which flows right through my whole family.
A couple of my favourites are:
“Once you choose hope, anything’s possible” – Christopher Reeve
“Always remember you are braver than you believe, stronger than you seem, smarter than you think and loved more than you know” – Christopher Robin.
If you would like to share your miracle moments and special needs journey, please get in touch here.
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