My oldest daughter will always be a special needs sibling

If you had asked childhood Meagan what she wanted to be when she grew up, she would have said a mom. Four-year-old Meagan would have said a shortstop for the Texas Rangers, but after that, being a mom was my biggest dream.

I didn’t anticipate making that goal a reality at the too-young age of 19, but I wouldn’t trade it for the world. Later this month, my oldest child will turn 18. Addisen’s childhood passed by in the blink of an eye. Did I cherish it enough? Does she know how much I anguish over every mistake I made? Does she know how hard I tried to give her the best life I could?

Addi got to be an only child for the first five years, and for that, I’m grateful. I had some growing up to do, too, so we got to do it together. But she was excited to become a big sister when her brother, Atlas, who’s now 12, came along. When I found out I was having another baby a year later, Addi announced that if this one wasn’t a girl, she was moving in with her grandma.

Addi was 7 when Austen was born and started experiencing seizures, and 8 when Austen received her diagnosis of Dravet syndrome — old enough to know her entire world had just been turned upside down. She was old enough to ask questions about seizures and how Austen’s life would look, and it changed her. Addi gravitated toward being a caregiver to Austen, even as she remained her big sister. The girls had a unique relationship.

Whether being involved helped her feel less anxious or she just knew how our Dravet journey would end, Addi watched over Austen. She preferred to work the oxygen concentrator rather than sit back when a seizure came. She protected her little sister against kids who didn’t understand her and sang her countless renditions of the nursery rhyme “Johnny Johnny Yes Papa.” But Addi fought with her, too, like any older sister would, and had to hide her art supplies and makeup so Austen wouldn’t sneak away with them.

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A life ahead of her

Addi will never be able to shed the title of special needs sibling. She’ll always be the girl who lost her sister at a young age. But while it has shaped the person she’s become, she hasn’t let it define her. She’s still the smart, outgoing, and vibrant person she was at 7. But she’s also compassionate, caring, and fiercely protective of those she feels life hasn’t treated fairly. And all those hours spent singing with Austen just might have inspired her own career ambition: Addi wants to be a music teacher.

I don’t expect my children to make Austen’s memory the center of their lives; I’ve only asked that they allow her to live on through them. It’s up to them to choose how that looks.

Addi has her entire life ahead of her. The tiny baby who was placed on my chest when I was just 19 is now approaching that age herself. She has my features, and my hair color, but she is uniquely her own person.

I know my job is not yet over, but my role is changing. Addi needs me less for day-to-day tasks and more for inner challenges. She’s no longer keeping me up because of nightmares and monsters under the bed; instead, she talks about boys, friends, and the intricate details of her daily life. I’m grateful that, despite the obstacles life threw in their paths, my children are resilient and determined not to let those obstacles define them. They are learning to view life’s struggles as badges of strength, showing what they’ve overcome.

Dravet syndrome played a big role in Addi’s life, but being a special needs sibling is simply a part of who she is; it’s not her whole identity. I can’t wait to see what life brings her. Whatever it is, I know she will conquer it with the same love, compassion, and determination she brought to her first 18 years. I’m grateful to get a front-row seat to her journey.

Note: Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Dravet Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Dravet syndrome.