‘You watch him in pain and feel the energy. Sometimes you feel robbed. This shouldn’t fall on your shoulders.’: Woman with special needs brother says ‘he taught me to be selfless’

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“What’s it like growing up with a special needs sibling? How do I accurately put it into words? There are so many feelings. Anger, guilt, loneliness, different, stressed… the list could go on! Sometimes you feel like you are robbed of a traditional childhood. You know, the one where you have able-bodied siblings to run around with. To play with. To have fun with. To fit with at times. The stress-free life where you only have to think about yourself being a kid.

Those of us with special needs siblings don’t get that. We are born into a world of extreme unknowns. There’s no handbook on how to deal with or support your parents and your special needs sibling. You spend your whole childhood watching your parents stress to take care of your special needs sibling. Doctors appointments, hospitals, physiotherapists, speech therapists, occupational therapists — that list could go on, too!

Courtesy of Jess Marriette

Sometimes you have to watch your special needs sibling go through surgeries or watch them be uncomfortable or in pain. Just as much as your parents are worried, unsure, stressed, and panicked, you are too. You can feel the energy in the house. All you want to do, as the abled-bodied child, is to make the situation lighter. To try and navigate it all you decided to host family meetings to check in and make sure everyone is happy. You set up your play computer and ask your parents how they are doing, in hopes to solve the heaviness. It does for a moment but you soon realize this life situation isn’t meant to fall on your shoulders. You’re the abled-bodied sibling. Your parents have so much fear and worry about your life being burdened by your special needs sibling. You were born into this life.

Instead, you learn at a young age life is heavy. But with that being said, you have an advantage in learning ahead of your age. The heaviness never really truly leaves you. Emotionally and mentally, you have to learn how to process the experience. How to go through the emotions because they are valid. Lastly, you learn how to move on and continue persevering on your life journey.

Courtesy of Jess Marriette

As a young kid, you don’t know what to do or how to emotionally handle what’s going on. No one expects you to know how to handle all of this. But it’s still your reality. You watch your friends with their able-bodied siblings and realize they don’t even know what they have! Because every birthday, when you blow out your candles, you use your one wish to wish for your sibling to be able to walk and talk. At that moment, you don’t realize you’re already learning at such a young age how to be selfless.

This inner battle as the able-bodied sibling is a struggle you’ll face your whole life. It never ends. When you think back to your childhood, you remember the pivotal moments. Like when you asked your parents to play with you during a time when they were doing their best to hold it together while your special needs sibling is screaming in pain. You remember the helpless look on their faces because they have to say no to their abled-bodied child, all while realizing their full attention needs to be on their special needs child. Those worried looks have never left my memories.

Courtesy of Jess Marriette

As you grow, you adapt to your normal. The normal of having a special needs sibling. You don’t know any different. You find ways to play and include your special needs sibling, although that doesn’t always come
easy. It’s always work. Even with something as simple as jumping on the trampoline, you’re the one doing all the bouncing, making sure your special needs sibling is safe and happy! You’re already learning how to take care of someone who relies on you for everything when you’re still a kid yourself. But you can’t help it because that’s your reality.

Courtesy of Jess Marriette

You’re an adult now. You look back on your life with your special needs sibling and realize you’ve learned so much. You have learned many important life lessons. Life lessons and truths that many don’t learn in a lifetime. How to be selfless. How to have endless limits of compassion and empathy. How to handle the heaviness of life. How to persevere and tackle whatever comes your way. You’ve learned life isn’t all about you all the time and that’s okay. You learn as much as you felt burdened at times by your special needs sibling, those feelings were valid but not necessary. God gave you a special life purpose for your family!

Mat and Sara
Mat and Sara

Now you’re about to have your own family. During your whole pregnancy, you feel so blessed and thankful it’s going well, considering you experienced a miscarriage your first time getting pregnant. But you’re not out of the woods yet because you know the reality that childbirth doesn’t always end in a healthy abled-bodied child. It’s not your story but it’s the exact moment your family’s life story became different.

Courtesy of Jess Marriette

Because it hits so close to home, you won’t feel completely relieved until you have your healthy baby in your arms. Your first thought as you feel the love for your child will be… ‘How did my parents do it all? How are they still doing it, taking on the responsibly of your special needs sibling with a good attitude and endless love for 27 years and still counting!’ Your life lessons and realizations being the abled-bodied sibling will stick with you throughout your whole life.

Written by a sister who is thankful to have a special needs brother.”

Mat and Sara

This story was submitted to Love What Matters by Jess Marriette. You can follow their journey on Instagram and their blog. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more touching stories like this here: 

‘Having 2 brothers with Down syndrome is far from disabling’: From ‘humiliation’ to ‘compassion,’ sister’s says her special needs siblings ‘teach us more than we teach them’

People Think Having A Sibling With Special Needs Is Sad, But I Wouldn’t Want It Any Other Way

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