Our Keepsake Journal is Here! 🎉

My firstborn was six years old when her little brother was born. She beamed at the sight of him, holding him whenever she had a chance, begging to feed him his bottles, and gazed at him almost as much as I did.

Things changed a few years later when my firstborn suffered a major stroke losing her ability to walk, talk, and feed herself. My son was not quite two years old when this happened.

The dynamic changed.

He became the one to bring her toys to play with, to remind me to give her the pills she needed every night, and he became the one to gaze into her eyes.

RELATED: Dear Sibling of a Special Needs Child, I See You

Our days were filled with doctor appointments, phone calls to pharmacies, arguments with insurance companies, IEP meetings at the school, as well as speech, physical, and occupational therapy appointments.

Our son’s T-ball practice, soccer games, and playdates were not the things that consumed our life. Those things happened but in the background. Never the foreground.

And while his sister was battling a brain tumor in addition to recovering from a stroke, he skipped off to school, made friends, and played sports. His life was moving on at the speed most people enjoy. Our life at home wasn’t conducive to those things nor was it moving at that speed. The things in his life never seemed to take center stage. But they did in his life. He made it so. Maybe he had the same sense of resilience as his big sister.

He was still the little brother, though, especially in his sister’s eyes. This meant he was teased relentlessly and talked about in an annoying way to all the doctors, therapists, and aides in her life. She also brought him a granola bar every morning after learning to walk again. She handed him a blanket on the couch so he could be comfy. She took care of him the way only big sisters can take care of their little brothers.

But he wasn’t an ordinary little brother.

My son was the one who cut up his big sister’s food when I couldn’t get to it. He poured a bowl of Goldfish for her when she said she was hungry, and I was out on a walk. He was the one who let her find the easy-to-find eggs on Easter morning.

In between school, sports practice, and endless playdates, my son joined the inclusive theater group his sister was in, helping some of her friends on stage. He raised money and shaved his head for St. Baldrick’s Foundation. He somehow figured out what was important in life–finding that balance between his needs and the needs of the greater world surrounding him. He was only 10 years old when he demonstrated this knowledge. Yes, maybe indeed he does have the same quiet strength and stellar attitude his sister had been demonstrating through the years.

RELATED: Losing a Sibling Means You Grow Up Just a Little Bit Faster

And now, as he’s about to turn 16 years old, he still demonstrates strength, fortitude, and a positive attitude that most only noticed from his sister. He has lived through saying a final goodbye to his big sister, lying in a hospice facility bed. He has watched his parents grieve the passing of their firstborn daughter.

He has learned to navigate a new landscape that no longer included the daily routine of caring for his big sister which once consumed our home life, but instead is now covered in a layer of grief.

He stoically held his own while his parents melted. He insisted he was fine. He attended his high school classes virtually like the rest of the world without complaint. He smiled, he played video games, and he lit up and laughed with us as we recounted funny memories of his big sister. He worked out with his football team, learned how to fish, and rediscovered neighborhood friends through this global pandemic that has been happening at the same time.

He has maintained that torch of positive resilience that we all saw in his big sister but now see in him. His awesome attitude and inner strength will push him far, and I can’t wait to see what lies ahead. Being the sibling in the shadow might have its bright spots after all.

So God Made a Mother book by Leslie Means

If you liked this, you'll love our book, SO GOD MADE A MOTHER available now!

Order Now

Check out our new Keepsake Companion Journal that pairs with our So God Made a Mother book!

Order Now
So God Made a Mother's Story Keepsake Journal

Amy Daniels

Amy Daniels has a master's degree in social science and writes about her experience raising two kids, one who had disabilities and complex medical issues due to a brain tumor. Her memoir, Reaching For Normal, is available now at most places that sell books. Follow her Facebook page as well as Twitter or Instagram

Dear Sibling of a Special Needs Child, Your Heart is Full of Beauty

In: Kids
Dear Sibling of a Special Needs Child, Your Heart is Full of Beauty www.herviewfromhome.com

Dear daughter, I feel like I should apologize. There are a million apologies I could list out for which you’d be more than deserving. Like the times you’ve had to sit through countless office visits trying to read or play quietly so your brother could get what he needed from his specialist, therapist, or doctor. Or all of the times you’ve been caught in the firestorm of times when he struggles to articulate his feelings and it comes out as hurling insults, books, or even fists or feet. And I’ll never forget the time we were asked to leave the...

Keep Reading

Her Brothers Are Her Protectors

In: Kids, Motherhood
Two young boys hugging their sister, black-and-white photo

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...

Keep Reading

The Sibling of a Child With Special Needs is Forced to Grow Up Faster

In: Kids
Three children sitting on ground

Son, The day I told your big sister she was going to be a sister, she was ecstatic. She rubbed my belly as it grew, read stories to my womb, and promised to be “the best big sister there ever was”. And the day you were born, she beamed with pride. You were “her” baby and she was going to teach you everything. She never got jealous, as many new siblings do. She doted on you, continuing to read you your favorite stories and introduce you to tea parties, Mickey Mouse, and baking—all her favorite things. I know you don’t...

Keep Reading