The hardest part for me, living with something I didn’t know I had, isn’t always what people think.
If the shoe were on the other foot, I don’t believe anyone in my position would have done things differently. When you don’t know what you’re dealing with, you can’t respond to it. And we all have a right to understand what it is we’re living with.
There are so many parts of this that are hard – the opinions, the judgements, the not caring, the things that were said without thought, and my daily challenges that come with living with a brain that doesn’t always co-operate.
But there’s something deeper that’s harder to carry.
The loss of autonomy – understanding who you are with a physical, mental and emotional disability – and having to muddle through your life on your own.
The loss of a life that with a disability could have been made easier.
The quiet grief that comes from realising that life could have looked different to how I imagined.
And then there’s the second hardest part.
The version of you that never got the parental support even though they could see your struggles – and they could see you fail.
The decades that passed without any understanding.
For all the times you struggled in silence, not knowing why things felt harder than they should.
Those are the thoughts that stay. The ones that surface and you carry quietly.
No one should have to feel overwhelmed and alone.
But what keeps me going – what grounds me – is shifting my focus.
Not on everything I’ve lost.
Not on everything beyond my control.
But on what I can hold onto.
The strength I’ve built – and continue to build.
The awareness I now have.
The way I’ve found my voice through writing.
The small wins that once felt impossible.
Because even in the uncertainty, even in loss and grief, there is still progress.
There is still purpose.
The hope that carried me as a child is still there.
I cannot rewrite the past or my experiences.
I cannot change everything based on my experiences.
But I can choose where my energy goes.
And where my focus goes… my energy follows.
Yes, that really does seem to be the hardest thing to deal with lately–all the “what ifs.” I can’t help but wonder if things might have turned out differently if I’d gotten the help I needed as a child.
What weighs on me the most is knowing I wasn’t there for my daughter when she needed me. I carry that with me every day. I can only hope that maybe, one day, she’ll find it in her heart to forgive me.
Living with these mistakes is a daily struggle, but I know I have to keep trying—to make the best of my life.
Thanks for sharing this so openly. I can really feel the weight of what you’re carrying, and it takes a lot of courage to put it into words.
Those “what ifs” can be incredibly heavy, especially when they’re tied to things we wish had been different. But the fact that you’re reflecting on it, and wanting to make the most of your time, says a lot about the person you are.
None of us get everything right, and sometimes we don’t have the support we needed when it mattered most. That doesn’t erase the pain, but it does help explain it.
As for your daughter–hope matters. People can surprise us, and forgiveness can take time, but the door isn’t necessarily closed. What matters is that you care, and that you’re trying.
You’re not alone in feeling this way, even if it can feel like it. And it’s not too late to create something meaningful from here.