What I want you to know about having a sibling with special needs

I‘m 20 years old, have two amazing siblings – a healthy brother who‘s 2 years older than me, and a little sister who‘s 6 1/2 years younger than me.

Long before my little sister was born i asked and asked for a little sibling. And finally, when I was 6 1/2 years old – my dream came true! My mother was pregnant with my younger sister.  But, while I celebrated my very first day of school, my mother was at the hospital. Two days later my sister was born – at 27 weeks, 13 weeks too early.

I wasn‘t allowed to see her for weeks. She spent months at the NICU; she had trouble with breathing. Her heart stopped many times. The doctors even asked my parents if they shouldn‘t just let her go the next time her heart stops beating. My parents didn‘t give up hope. She survived – with many damages to her brain, but she survived!

My sister always had some troubles with staying “healthy.” She often got very high temperatures from simple colds and she had epilepsy, because her brain was so damaged at her birth.

When I was 7 or 8 years old. I saw my sister having a seizure. She stopped breathing. She turned blue. My mother desperately tried to make her breath on her own again. After rushing to the hospital, and getting medicine, she went back to being “healthy“ weeks later.

One year later she had another seizure. She was napping and woke up  with a strange voice and a strange pattern on her skin. My mother knew what was going to happen – She put her on my lap and rushed to the hospital. She stopped breathing again. I remember standing in the hallway, crying and desperately trying to call my father who didn‘t answer his phone.

What I want you to know is that when I saw my sister fighting against death, I knew I would do everything I could possibly do to protect her. When I held her in my arms in the car, and her head touched the window, I screamed at myself in my head, because I didn‘t take good enough care of her. I was only 9 years old.

She survived. But we all got scars on our souls. What I want you to know is that I never forget that picture of her battling. What I want you to know is that I never was a “normal“ child. I didn‘t care what other children liked or didn‘t like – I never did very risky things, because I always knew how fragile my health is. 

I have always been very shy and quiet, because there is so much going on in my head that nobody my age can understand. What I want you to know is that I always felt guilty for being healthy. I didn‘t want to go play with the healthy children, because I knew my sister would never be able to play like normal children. I didn‘t want to leave her behind.

What I want you to know is that every time she has fever, I’m afraid. I‘m afraid of losing her. Of seeing her fighting. Of maybe having to let her go.

Fast forward – 10 years later. My sister didn‘t have anymore seizures. She actually didn‘t have to take her medicine anymore. She lived a happy life: went to school, talked like crazy, and really enjoyed watching TV.

On May 8th, 2013, all of the sudden my 13 year old baby sister had two seizures. My mom called me, picked me up and we rushed to her and my father in the hospital. It was one of the worst days in my 20 year-old life – seeing her lying in the bed. She didn‘t always respond when being talked to. Her eyes were shaking, she was constantly puking. She wasn‘t herself. She could not really talk. She repeated herself over and over again.

I want you to know that I‘ll never be able to tell anyone what I was feeling when I saw her like that. I felt that fear again – that fear of losing her. Of losing the most important person in my life.
She managed to bounce back. But now she has to take her medicine again, which makes her extremely tired, which makes it very difficult for her to talk so we can understand her. 

What I want you to know is that I could break down and cry, every time I look at her tired face struggling to stay awake.

I know that we‘ll make it through. I know she can do it. But what I want you to know is that she‘s both the best and the worst thing that happened to me. I would never, never, never want her not being in my life. But I would give everything so that she could just be healthy. I would do everything.

What I want you to know is that I do not care, which music is the best or which actress is the funniest.  What I want you to know is that I never had many friends, because I‘m just not like everybody else. What I want you to know is that I never had someone my age to talk to about all these feelings, because nobody could understand what I was feeling. I want you to know that I always felt so much different than all the other kids/teens. I‘ve been always told that I‘m so mature, acting like I‘m much older than I am. Nobody can understand that guilty feeling, because I CAN go out and meet someone. Because I can do what I want to do.

What I want you to know is that I had/have big problems with my self-esteem.  Imagine going out with your family, feeling as normal as possible (because, heck, it is normal to me!) and being stared at ALL. THE. TIME.  Imagine being a teenager, being stared at – And thinking there‘s something wrong with YOU, because everybody keeps looking at you. It‘s an aweful feeling and now most of the time I do not care. But what I want you to know is, that it‘s not easy. It really isn‘t. But it is oh so worth it.

Please don’t get me wrong. My sister is the most amazing person I’ve ever seen. She has been through so much and just keeps smiling. She says the funniest things. She loves everybody. She has a light and sparkle in her eyes. She’s a miracle.

But I want you to know that every family has it‘s story. I want you to know that when a child has special needs, the whole family has special needs. That’s my opinion. I want you to know that I do not want anybody to feel sorry for my family or me. I just want you to know what it’s like having a sibling with special needs.

It‘s both wonderful and terrible.