Meet Anna and her son…..
This is our gorgeous William. My first born. The person who made me the mum I so longed to be.
Appropriately nicknamed Sweet William by hubby’s Grandma, he has an infinite amount of love to give the world. If you need a hug, William is your man!
William loves books, trucks, music, the water and The Wiggles (and by loves I mean obsessed!).
William is strong, resilient and so brave when it is needed most.
William has a smile that could light up the darkest of rooms and an infectious laugh.
William is like any other cheeky, determined and temperamental three year old.
William also has Epilepsy.
When he was 18 months our world as we knew it changed forever. To cut a long story incredibly short we had huge concerns as our previously happy little boy seemed to be disappearing. In the space of a few weeks he went from having the occasional fall to dropping to the ground every hour, while becoming increasingly irritable and impossible to console day and night. Despite our concerns multiple medical professionals constantly reassured us that William was just having a hard time adjusting to childcare. My mother’s instinct screamed something more was wrong. I was William’s protector and as he was unable to it was time for me to fight for my child. Something was not right.
I took him to the emergency department and it was the best decision I have ever made in my parenting journey so far. My only regret is that I did not do it earlier. Soon after we had our diagnosis and we were relieved to finally know what we were dealing with. Little did I know the reality of the hard journey ahead.
Of all the many thousands of things I stressed about as a first time mum Epilepsy was not on my radar. Epilepsy is the most common brain disorder worldwide. In Australia approximately 250,000 people live with Epilepsy and one in 25 people will have epilepsy at some point in their life. There are so many misconceptions about Epilepsy. There are also many different types and treatment options, making finding the right one incredibly hard.
We are one of the lucky ones. After trialing many different options (medications, vitamins, diet) over the best part of one very challenging year we have found our miracle medication mix. William was having multiple seizures every single day, requiring constant supervision for his own safety while waking numerous times every night but now we are 10 months seizure free and most importantly William is happy again (most of the time, he is 3 after all!). If William is happy our family is happy.
Epilepsy impacts every aspect of our life and William’s development. Some days I get caught in the “Why Us” cycle but this achieves nothing and we have no time for negativity. It breaks my heart that our child needs to work ten times harder to achieve what comes naturally to a lot of his peers.
I have learnt so many things through this difficult journey:
1) Trust your instincts. You know your child best. Don’t let anyone make you question otherwise. If something doesn’t feel right, no matter who is telling you otherwise, no matter what position of authority they are in, get a second, third, fourth opinion and fight for your child until you find someone you trust.
2) Find the right medical team for you. Surround yourself with people you trust and who believe in you. There are some amazing professionals out there.
3) We are tougher than we realise and for our families we can get through anything. We deal with the cards we are given in life and especially when your children are involved you will be capable of doing whatever it takes, no matter how hard that is.
4) What to say to someone going through a difficult time with their children: just be there. Message, organise a visit, send a care package or help with the everyday chores. Life goes on and sometimes that is hard. Family helped us by organising meals and house cleaning and it made all the difference.
5) Treat the family, especially the child as normal as possible (normal, what even is that!!!). Post diagnosis normal was (and still is) what we strive for. For our child to be included in everyday activities and be one of the other children makes us happy beyond words.
No one said parenthood would be easy and some days have been and still are beyond hard. Although this is not the journey I would have chosen for my family I could not be prouder to call William my son. William challenges me more than anyone I have ever met and also gives me more moments of joy than I knew existed. He has taught me so much but most importantly he has taught me real unconditional love. I never knew I could love anyone or anything as much as I love my children.
Epilepsy may be a part of our journey but it does not define us. With every piece of our being we love every part of William just the way he is. We will continue to focus on the abundance of good in our lives and as a family we will get through this bump in the road with patience and love as William has too much greatness to offer this world for it to be any other way.
To follow Anna’s journey you can find her at
@chicfamilycollection on Instagram
or follow this link http://www.chicfamilycollection.com.au/blog