My Baby Sister Knows I Have Cerebral Palsy
My sister is pretty smart. She’s a year old now.
She knows I’m a bit different to other kids.
Sometimes, she stops eating the TV remote and watches me.
I can imagine her wondering what it is that makes me different.
She’s sitting and standing now. She’s taken a few steps, and she’s so chatty.
She climbs over everything, and she always turns off the television when I’m listening to it. She’s feeding herself and playing with toys.
She watches me and she wonders why I don’t do those things.
She knows I am different to her.
One day, Mum and Dad will tell her the words she will need to know…
- Brain damage and moderate bilateral posteria periventricular leukomalacia
- Cortico vision impairment
- Level 4-5 cerebral palsy — spastic quadriplegia with dystonic quadriplegia
But for now, she just knows me.
Right from the start, I’ve loved her. So much. I loved her even when she kicked me while she was still in Mum. She still hits me sometimes… for no reason. But she loves me.
She’s too busy to go around giving people kisses and cuddles. But, guess what? She kisses me. And she lies on me, and that’s like a cuddle.
She’s really good at blowing raspberries on people, too, and I’m one of her favorite people to blow raspberries on. She crawls over to me, lifts up my shirt and my belly tickles with her little, noisy raspberries.
She’s started to offer me my drink, and sometimes she tries to feed me. She usually snatches toys away from me, but sometimes, she hands me something to play with.
In the morning, when she gets out of bed, she claps and cheers when she sees me. My sister loves me.
I get lots of stares when I’m out and about… and my sister will get these stares, too. The stares are funny, sometimes. Sometimes, we don’t notice them and sometimes, they’re hurtful and frustrating.
Sometimes, people will do anything to avoid looking at me, and sometimes, people will almost crash in to a pole, because they’re staring at me. I get many, many double-takes and lots of whispered comments.
My sister will grow up feeling these, too. Some days, this will be awful for her, and she might even have occasions where she’s embarrassed and even angry and resentful for having to put up with my stares.
But, I know that these moments will pass, and that underneath everything, she loves me with all her heart.
I know she’ll play tricks on me and tease and torment me. She might even try to blame things on me. All sisters do that sometimes, right? But she might have to take the rubbish out or vacuum the floor… and I probably won’t have to do that!
My sister has a brother with severe cerebral palsy… who has no words, yet…
and I have a sister who already has incredible empathy and understanding. She doesn’t have the words, and she doesn’t know why I’m different. She just knows I am different. And she knows to be proud of me.
She’ll see me doing my exercises, and she’ll clap and cheer. She kisses me for no reason, and she goes around the house saying “Hi, Dexter!” in her cute, high-pitched little voice.
My sister may face a lot of difficulties and hardships, judgement and teasing because of me. She’ll also see the way people look at me, and how they treat me. She’ll hear their comments. She’ll see their pity. And she’ll see the people who actually see me — Dexter — a little boy. My sister will probably always see people for exactly who they are, not what they look like or what they can do. For that, I’m very proud of my sister, and I love her very, very much.
This post originally appeared on “Love Dexter,” a blog written in Dexter’s voice by his family members.