Epilepsy isn’t just seizures.
Epilepsy is exhaustion, drowsiness, mood swings and lack of routine.
People ask me daily ‘how’s he sleeping?’.
My answer is the same as it has been for the past 3 years…. His routine is the same day and night.
Play (if we’re having a good day)
There’s no difference whether it be day light or night time.
Due to consistent seizures occurring 24 hours a day, strong medications plus the rest of his struggles he sleeps alot, but not in one big stretch, lots of disturbed naps.
I really hope that the new conversations we’re having with Neurology bring effective plans with great success.
People comment daily about how happy Zachariah is and how beautiful his smile is.
They are correct, but this is only a snapshot of his life. My aim is to make it a bigger picture by continuing to work on the balance of meds etc.
I want to see the boy everyone else sees more frequently and see him enjoy life even more, and achieve what he wants to achieve.
We do try so hard to be a positive family, and we genuinely love life. We also battle every single day and use so much energy to achieve this.
This is our life.
This is why it’s so hard to answer the other question we get asked every day..
How’s he doing?
This is so hard to answer. As you never know what the person wants to hear. Do they want the hard truth, the general answer or the everything is rosey answer.
As the truth is, Zachariah lives with a life limiting condition, there is no quick fix, there is no way to make our life magically worry free. He lives with disabilities, scoliosis, dislocated hip, epilepsy, reflux, visual impairment, frustrations, communication difficulties.
So every day we are battling something. One or all of these things will affect his day, his mood and his strength.
That being said, Zachariah loves life. He is easily pleased with a kiss , a story or a walk.
My point is that the questions are always so hard to answer.
Right now he’s home, he’s able to enjoy things, but behind the smiles and the little cherub face, he’s fighting. Behind the beautiful sleeping face, he’s resting off a seizure with another ready to pounce.
Finding the balance in our life. Knowing when to reach out in desperation, but also knowing when to smile and celebrated can be tricky.
I do both. I’m happy. I’m in love. I’m hopeful and full of joy. I know and love a God who promises to hold and strengthen me. I am also not afraid to show my sadness and my struggles. I want to be surrounded by people who get this. Who will ask questions with full intention of wanting to know the answer. But also know that my answer is for that moment. And there will always be struggles in the background, and things to be thankful for.
I also try to be aware of others around me. There is a time to be silent. A time to be there for others. Be strong. Be kind. Be a good listener.
Life is about balance. It’s about doing life with others rather than claiming to be in front or behind one another. Stand side by side and know your time to speak or listen.
Life is a journey. Nothing is set in stone. Things change. People grow. Be part of the movement. Be part of other people’s lives. Be transparent but also mindful.
In the time I’ve written this, Zachariah has now woken up, had a seizure, and is now singing a beautiful, bubbly song.
Walk with God or people close to you through the good and the bad. Sing with joy and cry in sadness.
Life is made up of every season. They come and go. They help us grow.
We are blessed.
I am now off to celebrate with my boy through play and music. Through our play we will miss his baby brother, but be thankful for each other.
Epilepsy is more than just a seizure.
Life is more than just life. It’s a journey. It’s love. It’s loss. It’s joy. It’s sadness.
Love your life. Love your struggles. Be thankful.