Real Talk

Growing Up with a Disabled Sibling

Actually, the title should be “Growing up with a sibling with disabilities” but I’ll let political correctness go this time. Anyway, here’s my story and my thoughts about growing up with a sibling that has major physical and mental disabilities.

IMG_0779It’s hard. Like really, really hard. But I don’t know if I ever realized how hard it was until I was an adult because I didn’t know any differently. I was 5 years old when my brother James Kyle was born and a when he was a few months old the doctor, not so eloquently, stated that he was mentally retarded. And that’s why I will 100% correct you if you misuse that word – you’re educated, find another word. Anyway – Kyle was diagnosed with Chromosome 18q-  and the specific deletion in his 18th chromosome was so rare that he was only the 8th person in the world know to have it in 1998.

Hold on, that’s his story.

But see, I can’t really tell my story without immediately diving into his story because they’re one in the same and it’s hard to unweave them. Also because I’ve been telling Kyle’s story for as long as I can remember. I’ve told it in private settings, on the radio, on TV, on stages with a microphone – I can tell his story better than I can tell my own. And there it is, the first thing I learned: I come second. Not because my parents loved me any less but I quickly realized that Kyle’s needs come first. Our household revolved around him because they had to. The funny thing is, his world revolved around me – but we’ll come back to that in a minute.

Being 5 years older than Kyle I was able to take care of myself and expected to. I’m not sure if my parents expected me to, but I started to expect it of myself. Remember, Kyle came first and if I could handle something on my own then everything was easier for all of us if I did. Our age difference also meant that I was a third caretaker. Feeding him, changing his diapers, getting him dressed, putting him to bed – I (sometimes gladly and sometimes not so gladly) took on those responsibilities too, especially as I got older.

2015-12-03_16.58So I grew up quickly. A lot of kids have to grow up quickly for one reason or another whether it’s because of divorce, death of a parent, poverty – but this was mine. I distinctly remember babysitting him when I was probably 12 years old while my parents went on a much needed dinner date. He was watching TV and then suddenly fell over in a seizure. I went into survival mode – counting how long his seizure lasted so I could inform EMTs, grabbing his oxygen while I dialed 911, calmly explaining the situation and giving our address to the dispatcher, and administering his emergency seizure medication while I waited for firefighters. I remember it like it was yesterday.

That was the first time I was tasked with saving my brother’s life. But back to the point of this story.

There’s a loneliness that people don’t really talk about when you’re a sibling that has to come second. But then again, I think the introvert in me appreciated it. Or maybe it made things worse because if I was asked to talk it always seemed to be about him. I became really good at keeping any sort of emotions to myself. I was strong and would not cry – partly because if I cried then my brother would cry. In hindsight, it probably significantly contributed to the anxiety, depression, and trouble processing emotions I dealt with in high school and college.

Remember what I said about his world revolving around me? Well, it’s true. And anyone that knew him would tell you that. He loved me more unconditionally than any human ever will (sorry, Mom and Dad). If I was in the room then no one else mattered. And that right there, the love we shared for one another, made everything worth it. I can’t really explain it better than that sentence right there.

IMG_0780It’s hard to be mad at a kid for banging on your door while you’re doing homework when all he wants is to spend time with you. It’s hard to be mad at him for always being in your personal space when all he wants is your arm around him. So I guess it was hard for several different reasons, however always worth it.

But I bet you’re probably still thinking about my comment earlier: being tasked to save his life. The night he died, Kyle had been snuggling with me in my bed and feverish but nothing to alarm us that this was something we couldn’t handle at home. Not long after putting him to bed, I distinctly remember my Dad walking into my room and very directly telling me that he needed me to give my brother CPR . I was a lifeguard the first two years of high school so I had been trained. Kyle’s fever had triggered not just the typical seizure, but grand mal seizures that we couldn’t stop. So as my Dad called 911, my Mother stood next to me and watched me give my 11-year-old brother CPR until the firefighters arrived. Not a typical weekday night for a 16-year-old girl.

The next several hours go like this in my memory:

  • an Emergency Room full of nurses and doctors
  • sitting in an Intensive Care Unit waiting room
  • the doctor asking for my Dad’s permission to stop CPR as they had done everything they could
  • being pulled off of Kyle because I was in shock and hyperventilating
  • looking blankly at a stranger who was asking if we wanted to donate Kyle’s organs
  • delivering the news to my grandparents shortly after the sun rose

IMG_0929To be honest, I was a zombie for months after his death and I don’t have many memories from that time. When he died I didn’t just lose my little brother. I had been a major caretaker in his life for years, so it was like I lost a brother and a child that night. Although, I can never imagine or begin to articulate what my parents went through.

What I do remember is that there were so many people at his visitation that there was a 3-hour-long line wrapped around the building, and his funeral was so packed that folding chairs had to be set up in the back. I also remember having a face of stone as I walked down the center aisle hand-in-hand with my parents as every single person in that church looked at us. I was determined be the rock for my parents that I had trained my whole life to be. I could cry alone, on my own time.

So that’s what it was like growing up. I can’t imagine the person I would be today if Kyle had been “normal”. I certainly wouldn’t be who I am now. But I never wished for that – for him to be normal. See, growing up with a sibling with disabilities can be really hard but it can also teach you more about life and love then you ever thought possible. He also touched more lives than any of us thought possible.

I don’t know many people that have siblings with severe disabilities to I can’t speak for all of us. But I can tell you one thing: I almost guarantee they will tell you that every hardship is worth it and they wouldn’t change a thing.

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