The sibling balancing act

When one needs more, the other feels expected to "be" more

This weekend my eight year old daughter told us for the first time, in her own words, how hard it feels sometimes having a sister who is so different.

It all started with a small, seemingly insignificant event on Friday evening: she was excitedly unpacking a craft to do together and, while not paying much attention to her surroundings, managed to knock over a full pint glass of water (narrowly missing her dad’s computer and a big stack of mail).

My reaction was instant and not intentional. “Charlotte!” I exclaimed, with a frustrated and annoyed tone. It had been a long day, and week, and I was exhausted. All parents probably feel their patience worn thin after five days of juggling it all: add in the extra responsibilities of caring for a three year old with complex needs, while working full time and managing the household? Worn thin is an understatement.

I grabbed a couple of kitchen towels, and told her she needed to be more careful and to pay more attention to what was happening around her.

If it was just spilt milk, that probably would have been the end of it. But the tears kept falling, rolling down her beautiful rosy cheeks as her big blue eyes looked at me, almost pleadingly.

I knew she needed to talk. “Why are you so upset, Charlotte? We all have accidents, it’s ok. I just need you to be a little more careful.”

I pulled her in for a hug as I saw her little lip quiver.

“Poppy knocks things over all the time” she said quietly, looking at the floor.

“But I’m the only one who gets told off”

I held her closer, thought for a moment, and sighed as the mum guilt took over in full force.

She was right.

It wasn’t fair that she got told off and her sister didn’t. That Poppy was constantly trying to grab things off of tables or knock over towers Charlotte had carefully built or get too physical when she got excited- and while we intervened, we never raised our voices to her.

“You’re right, Charlotte. But you know your sister can’t help it, and she doesn’t understand the same way we do…” I started to explain, and she stopped me.

“I know Poppy’s brain works differently, and I know she can’t help it, but it still doesn’t feel fair,” she said.

“I’m just telling you how it feels.”

My kind, empathetic eight year old went on to explain in her own words how it felt to be held to a higher standard than her sister all the time, to have such different expectations set upon her and to be constantly asked to help and support.

To act so much more grown up than I ever had to be at her age.

My heart broke in that moment.

I had long worried about her feeling lonely because her sister couldn’t interact with her the way most siblings do, and we had already dealt with some teasing from some not-so-nice children at her school. But I hadn’t really thought about the unfairness she must feel. How noticeable it must be to her that our expectations are so different for her and her sister.

The guilt was overwhelming, and soon I was in tears too. Mirroring her openness and honesty, I acknowledged her feelings and apologized for not realizing sooner how this was making her feel. I told her that her dad and I were trying our best, but that we were finding it really hard too, and that we were learning how to navigate a very different kind of parenting that we never expected we would need to do.

She nodded and cuddled in closer. “I know.”

We talked for ages that night, cuddled up in her bed. Sharing ideas to try and work through these things, what we could do differently, how we could take some pressure off.

We talked about how hard this was for all of us and how we all needed to be more open and honest when we were finding things overwhelming.

That is was okay to talk about the tough stuff, and not always feel like we have to focus on the positives and be strong and feel thankful.

That some days are heavy, and the unfairness of it all feels hard to escape.

As I felt her breathing slow beside me, I looked around her room, softly bathed in the glow from her nightlight: Lilo & Stitch prints up on the wall, Monster High dolls set up meticulously on the floor. Cuddly toys carefully placed in their favourite spots for bedtime. Her sketchbook open on her desk, covered in colourful drawings of her favourite animal, the capybara.

She is just a kid.

I think sometimes we forget that. Not intentionally, but unfortunately. In the constant state of stress and worry that comes with disability parenting, we forget sometimes that our daughter is only eight.

We haven’t purposefully put higher expectations on her, but it’s happened nonetheless. Maybe it can’t be helped when you consider how much extra care and attention her sister needs.

Guilt upon guilt.

I can’t imagine dealing with all of this at her age. All the changes in our household, all the extra ways she helps her sister. Trying to push Poppy around in her wheelchair on footpaths that aren’t designed for people with mobility impairments. Helping her to take a bite of food or a sip of her water. Learning to use an eye gaze device to help her sister communicate. It’s a lot for us as adults. It must be even more for her.

And the emotional side of it too. Not being able to whisper secrets or play her favourite games with her sister, having to explain to the kids at the bus stop why her sister can’t speak or why she’s in a wheelchair for the short walk over from our home.

We’ve tried to be careful about how much we share with her about Poppy’s condition, especially the health implications, but we’ve also been honest with her about why her sister is different and what that means for all of us. She’s far too aware to hide it all from, and we felt she had a right now as a member of the family.

So here we are.

At the very least, I’m glad she felt she could share these feelings with us. I’m so proud of her for figuring out what they are and how to put them into words. But at the same time, those words broke my heart and added a whole new realm of worry to the ever growing cloud in my mind.

Support for Charlotte looks very different than the way we care for Poppy. But it’s needed just as much.

Because it isn’t only challenging to be the parent of a child with complex needs. It’s tough to be a sibling too.