Sadie Mae
Sadie Mae was only four months old when epilepsy entered our lives.
At four months old, a baby should be discovering the world around her—smiling, learning new sounds, reaching for toys and being held safely in her parents’ arms. We never imagined that at such a young age we would begin a journey filled with seizures, neurologists, medications, EEGs, MRIs, lumber puncture, hospital visits and so many unanswered questions.
Sadie began having seizures as an infant, and from that moment forward, a part of our lives changed forever.
In those early days, we hoped epilepsy would simply be something she would eventually outgrow. We learned medications, watched for side effects and became familiar with things no parent ever expects to know. We learned how to recognize seizures, how to time them and when to intervene. We learned to watch her breathing, her colour and her responsiveness.
Most of all, we learned how frightening it is to watch your child have a seizure and be completely powerless to stop what is happening inside their brain.
As Sadie grew, epilepsy grew with her.
Today, at four years old, Sadie has been living with epilepsy for almost her entire life.
Her seizures haven’t always looked the same. Some have involved her suddenly lying down, becoming stiff and unresponsive. Her eyes may roll back, and afterward her body becomes limp. There have been seizures where she has shaken or had abnormal eye movements. During some events, her oxygen levels have dropped into the 80s.
Then comes the aftermath.
People often think a seizure ends when the visible seizure stops. For Sadie, that isn’t necessarily true.
Afterward, she can become incredibly pale—even her lips can lose their colour. She may be dizzy, nauseated, exhausted and sore. She can have headaches, lose her appetite and sleep for hours. There have been days when a seizure has taken almost the entire day away from her.
There have been seizures that left us terrified as she can spend some days exhausted and vomiting from a big seizure.
And every time, as her parents, we are watching.
Watching the clock.
Watching her breathing.
Watching her colour.
Waiting for our little girl to come back to us.
Epilepsy Between the Seizures
One of the biggest things we’ve learned is that epilepsy isn’t only the seizures.
For Sadie, it can affect everyday life.
There are periods when the dizziness is so severe that walking becomes difficult. She would fall frequently or need to be carried, pushed in a stroller or pulled in a wagon because she simply couldn’t manage the distance herself.
Eating has sometimes taken more than an hour because of nausea, fatigue or a lack of appetite. There have been times when she needed help just to get through a meal.
We’ve watched her struggle with exhaustion, headaches, sleep problems and unexpected daytime sleepiness.
We’ve seen changes emotionally and behaviorally too—shutdowns, staring spells and meltdowns that can be difficult for other people to understand.
These are the parts of childhood epilepsy that people don’t always see.
A child may look perfectly fine in a photograph.
They may laugh and play one minute.
But behind that picture can be a family constantly calculating when medication was given, whether a movement was a seizure, whether a new behavior is a side effect, whether she’s unusually tired, and whether tonight will be a quiet night or a night that changes everything.
Finding the Right Treatment
Over the years, Sadie has been treated with four different anti-seizure medications.
Each medication brings hope.
Maybe this will be the one.
And each medication change also brings worry.
Will it stop the seizures?
Will there be side effects?
Will she become dizzy?
Will her appetite change?
Will her behavior change?
Will she finally get some relief?
We have gone through increases, decreases, titrations, medication combinations and transitions from one medication to another.
At one point, increasing her medication was followed by significant dizziness. With another medication brought concerns about behavioral changes. We’ve had to balance controlling the seizures with allowing Sadie to still feel like Sadie.
That balance can be incredibly difficult.
Searching for Answers
Sadie has undergone multiple investigations, including EEGs, a 24-hour EEG, MRI imaging and a lumbar puncture.
There have been numbers of blood tests, emergency department visits, specialist appointments and conversations about what comes next.
We have pushed for answers and further opinions because when it is your child, “we don’t know yet” is incredibly difficult to live with.
Her care has taken us through New Brunswick and into conversations with larger children’s hospitals, with a referral to SickKids in Toronto that was accepted.
Through all of it, our goal has remained incredibly simple:
Give Sadie the best chance possible to live the childhood she deserves.
The People Who Help Carry Her
Epilepsy doesn’t disappear when Sadie goes to daycare or leaves our arms.
We’ve been incredibly grateful for the people who have learned about Sadie’s seizures and have helped keep her safe.
Her daycare teachers have supported her through difficult days, watched for seizures and changes, comforted her when she wasn’t feeling well and helped give us peace of mind when we couldn’t physically be beside her.
Having people willing to learn about your child’s epilepsy and treat her with compassion rather than fear means more than we can put into words.
More Than Epilepsy
But this is the most important part of Sadie’s story:
Sadie is not epilepsy.
She is a little girl who happens to have epilepsy.
She is funny.
She is loving.
She is determined.
She is surrounded by siblings, grandparents, cousins, teachers, friends and a family who absolutely adores her.
She has grown from that tiny four-month-old baby having seizures into a beautiful, strong four-year-old girl who has already overcome more than many people will experience in a lifetime.
Epilepsy has taken things from her.
It has taken ordinary days and turned them into hospital days.
It has interrupted birthdays, daycare, meals, sleep and play.
It has made us afraid of things other families may never have to think twice about.
But it has never taken Sadie’s spirit.
And it has never stopped us from fighting for her.
Our Hope
When Sadie’s epilepsy journey began at four months old, we had no idea what the next four years would look like.
We still don’t know exactly what the future holds.
There are still unanswered questions. There may be more tests, more appointments, more medication changes and possibly different treatments ahead.
But we do know one thing.
Sadie will never face it alone.
We will continue advocating.
We will continue asking questions.
We will continue learning.
We will continue celebrating every good day.
And we will continue sharing her story because childhood epilepsy can be incredibly isolating, and sometimes another family simply needs to know that somebody else understands.
Behind every epilepsy diagnosis is a person.
Behind every childhood epilepsy diagnosis is also a family holding their breath through seizures, celebrating milestones differently and learning to find strength they never knew they had.
Our family’s epilepsy story began with a four-month-old baby.
Today, that baby is four years old.
And her name is Sadie Mae.
She is brave. She is loved beyond measure.
And this is only the beginning of her story. 💜