I Have Hope But My Heart Still Hurts


My baby girl’s body is changing.

At 9 years old I can see the beginnings of the tell tale signs of puberty. I am really hoping it will be a long way off as I am not ready for all that comes with that yet. Isla still needs a lot of help with toileting and is still in a night nappy so I do not want this to happen any time soon. My heart hurts.

She is growing taller and her last year’s clothes do not fit. She has gone up a size in her shoes but she still remains much much younger. Her love for Thomas the Tank Engine, Cars and Paw Patrol haven’t changed. She is 4 years away from becoming a teenager and although has come on in leaps and bounds, is still not able to write a paragraph of a story independently.

I hug her like a small child but these long legs and arms don’t fit like they used to. I can’t scoop her up and carry her now when she is upset. I love her so much but my heart hurts.

She is growing up before my eyes. I don’t know how I can help her any more. I am running out of time. I haven’t given up but being inside my head is wearing me out and my heart hurts.

The sad truth is intellectual disability and autism in adults isn’t cute. I am not ready for her not to be cute. I want to fix her teeth but how can we even think about braces when it’s a struggle brushing her teeth each day. I don’t want her to be an adult with wonky teeth. It makes my heart hurt.

When these things frequently pop into my head, I try to push them away but they catch me unaware causing me to catch my breath and my heart literally hurts. Its not a pain but a heaviness and an ache. I am learning to practice mindfulness in these moments and breathe through these feelings, these minor panic attacks, and then they normally pass.

It is not something I can control. I have been so good at not looking too far into the future, taking one day at a time, but with Isla growing so rapidly before my eyes, these episodes are becoming more frequent and I can’t push the feelings down like I used to.

I need to change my mindset. I need to have hope. I need to be okay with what will be, will be.

I need to have hope that one day she will be independent enough to live with some sort of independence. Not being too reliant on others and be able to manage to care for herself.

I need to have hope that some day she will have some sort of job and purpose. That she will be able to control her emotions and be able to focus on a task that she enjoys and that she will commit to.

I need to have hope that she may have friends and others who will look out for her. That she will enjoy doing things in the community with others rather than being trapped inside her virtual world.

I need to have hope people will be accepting and kind and go out of their way to help her. That our community will reach out and support her.

I need to have hope that she continues to know she is loved and feels safe and we live for a long long time to make sure this happens.

I need to have hope that these things happen and her sisters won’t ever feel the same way I feel now.

But most of all I hope she is always happy like she is now, whatever that looks like to others.

I have hope but my heart still hurts.

Published by Sara Stythe

Hi my name is Sara Stythe and I am a mum of 3 beautiful girls. This is a place to share knowledge, resources and information I have learnt along the way on this unexpected journey with our unique youngest daughter. Isla is missing a tiny bit of her 2nd chromosome (2q23.1 Microdeletion Syndrome, recently known as MAND) causing autism, epilepsy and development delay. If you would like to receive my new blog posts by email you can subscribe. Thank you

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