I remember the days I told my daughter about my pregnancies with each of my boys. Both times, she was elated. She rubbed my belly excitedly, lovingly participated in the decoration of their nurseries, and embraced everything about being a big sister. And her excitement and love didn’t stop once they arrived. She doted on both her brothers, always singing to them, reading them bedtime stories, and being ready with a pacifier should one fall. It didn’t matter whether they interacted with her or not, she was their first friend and biggest fan. She loved them fiercely.
Then came autoimmune encephalitis.
They were too little to understand, I thought. Just four and five.
Overnight, their sister was robbed of words, mobility, and empathy.
And they of not just their best friend, but also much of their childhood.
Suddenly their needs were second to her survival.
They were shuffled between grandparents and friends for days, and sometimes weeks, as Mom and Dad fought for answers, help, and stability. And that pattern would become their norm. They saw their parents for quick meals, read bedtime stories over FaceTime, and blew birthday candles out in ICU waiting rooms.
Their sister would come home, but the best friend they remembered wouldn’t.
Acronyms like OT, PT, and IVIG would become commonplace, and words like g-tube, pulse ox, and seizures part of their daily vocabulary. The beeping of her machines would become little more than background noise, and sadly, so would her screams.
In an unfair reversal of roles, they became her best friends and biggest fans. Their fierce love for her made them her greatest protectors.
Imagine holding the hand of someone who once protectively held yours. Talking to them, even when they can’t answer, and reading them bedtime stories, just as they once had to you. Imagine pleading to sleep on your sister’s floor, afraid that otherwise if she seized in her sleep, she’d die alone. Imagine accepting that one day you will lose your sister to this awful disease, and realizing that children, not unlike yourself aren’t invincible.
Now, imagine processing all that before you can even tie your own shoes.
Imagine begging doctors to make your sister better, bargaining with God, and offering up your favorite toys in hopes He’ll do so, and asking through tears if a seizure is your fault.
Picture missing birthday parties, canceling play dates, and having your mom miss your first run in t-ball because she was with your sister, hours away in a hospital. Now, imagine at six years old, understanding things enough to be OK with that.
Trade trips to the park or the playground for afternoons spent drawing with sidewalk chalk or playing catch with mom in therapy parking lots or hovering over your iPad in waiting rooms while your sister sees yet another doctor. Now, imagine a world where this is normal.
Think about growing up, only going places as a family that are wheelchair accessible. Imagine helping to push a wheelchair onto the beach, racing the clock to get a tent up so your sister doesn’t overheat. Then, rather than running for the water, choosing to sit with her under it and build a sandcastle first.
Their lives changed the day she got sick. Their opportunities for adventure lessened and their social supports shifted. But in spite of those things, their hearts grew.
They learned to prioritize presence. They accepted young that the world does not revolve around them–and they recognized that does not mean they are not loved to pieces. They are the most compassionate children for their experience, and I know they will grow into amazing young men.
They’re confident. They speak up for their sister. They understand the importance of advocacy and the role of education. When people stare, they don’t start out defensive. They explain what each piece of equipment does. They assure onlookers that even when she can’t talk, she CAN hear them, and asks how they’d feel if someone was pointing at them talking about them as if they were not there. Their empathy is unmatched.
Illness has put me face to face with unthinkable things.
But it has also shown me the beautiful hearts of my boys, the unconditional love they have for their sister, and their acceptance of her, as she is.
They’ve promised her they will love her until she’s herself again, and they’ve promised me she will never be alone.
At eight and nine, they’ve seen more of life than many adults, but they aren’t jaded. They believe in the good of people and have hope for a cure. They know tomorrow isn’t promised for her, or them, and live each day to its fullest in a way most of us can only dream of.
These boys are walking wonders and the love their hearts hold enviable. They could have become bitter or angry, but their love for their sister only grew. So many people worry over how to treat her post-illness and all they need to do is look to them. Their world is now different–but their sister is unchanged.