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Siblings and Sacrifices

Siblings and Sacrifices

Siblings of children with complex medical needs and disabilities are an incredible kind.

They are resilient.

They love unconditionally.

They protect.

They educate.

They encourage.

As I’ve witnessed over the years in my own home, they often make many sacrifices too. They have a graceful way of making them effortlessly and without resentment.

My son is 19 years old and for many reasons, wise beyond his years. He has watched scary, life-threatening medical emergencies unfold before him. He has been trained to respond and he has learned to do so with a steadfast calmness. He has been forced to grow up rather quickly over the past 12 years. He’s seen up-close how very unfair life can be.

Through all of this, he is the most empathetic and caring big brother that his little sister could ever ask for.

Life teaches us lessons in harsh ways sometimes.

It can break a mother’s heart, while making it burst with pride at the very same time.

When he was younger, my son was dragged along to endless medical appointments and therapy sessions. There was never a complaint. There was rarely a question. It was always an adventure for him; he’d charm the therapists and be happily contented with chicken nuggets and ice cream afterwards. Countless hours spent sitting quietly and playing video games in waiting rooms were the norm for him. He didn’t know any other way.

Family vacations have been cut short. Beach trips and ventures that were meant to include our family of four have often morphed into divide-and-conquer missions; teams of two.

We’ve had to postpone or cancel plans and change directions at the very last minute. Time and time again. I can’t recall a time when he met any of those situations with bitterness or animosity. Even when feeling justifiably disappointed, he’s shown an innate ability to rise to the occasion with compassion and understanding.

I often hear: “I’m fine, feed her first, Mom.” “It’s okay, we can go another time, Mom.”  “Don’t worry about me, Mom.” “Call me when the doctor comes in and reads the tests, Mom.”

Life can feel like a balancing act at times.

Especially when he was younger, the guilt of letting down my first born often felt crushing to me. It always left me feeling torn, and as if I had failed. I have always tried my best to make sure that he knows how deeply loved and treasured he is. That he is genuinely seen and heard. He’s all grown up now. I often find myself standing in awe of the altruistic, unwavering selflessness he shows in many aspects of his life.

I can’t take any of the credit for it.

It’s his own nature and the way real world experiences have shaped him. It hasn’t always been easy for him, but he has beautifully embraced this life and he makes me so very proud. He’s made many sacrifices along the way. Although he doesn’t even realize it, he’s so much more than a brother. To the little girl who lights up when he walks into the room, he is the BEST big brother. In her eyes, he hung the moon.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Jodi Shenal

Meet Our Blogger

I'm a stay-at-home mom with two amazing children. My son is on the Autism spectrum and my daughter has a rare genetic disorder and multiple disabilities. I am passionate about advocating for my children, writing about our experiences, and raising awareness for other families in our shoes. Our family lives for the little things and we've learned to appreciate all the beauty that surrounds us

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