The other day I was on the train and couldn’t but overhear the conversation of the two women behind me. One of them was debating if she should stay with her boyfriend, who she didn’t think was ‘the one’ so she could be sure to get married and have kids before she feared she was too old to do so. They’d both always imagined marriage, a house, and kids and were scared of what their lives would be like if they weren’t on track to check off those boxes.

I knew I shouldn’t turn around and tell them this, but this is what I wanted to say.

Life is not a series of boxes to check off. No set of circumstances will make you happy or unhappy. That comes from inside you.

Life is not something you can plan. Maybe you’ve made it this far and kept up with your expectations for what you’d achieve and where you’d be, but we all fall off the path.

That journey people tell you about — that’s hindsight. It will all make sense in hindsight, even for you.

When I imagined my life it was so different than the life I have now. None of us can imagine the future. Marriage, parenthood, careers, homes…you have to work so hard to get these things and keep them, but so much is still outside of your control. Whatever you get will not be what you expected it to be. Hopefully it will be better.

Life is so much richer and more complex than any of us could ever imagine at the cusp of 30. When my wife told me she was pregnant I imagined first steps, the first day of school, high school graduation, a wedding day, grandkids. We will never get any of those things. But we got so much more.

Being the parent of a severely disabled child is not the type of parenthood we imagine when we dream of having kids one day. I love my son more than words can capture, more than I thought I was capable of loving. But I won’t pretend it’s also the most difficult experience I’ve ever had. It never gets easier, either. Even with a wife who is very much ‘the one’ for me there with me on this journey.

Do what feels right, not what you think you should do.

When you marry someone you truly want to marry, you have the love to carry you through the hard times. Every marriage has hard times, it’s not a sign of failure or having made the wrong choice. There will be no neon sign pointing to ‘the one’. Some of us feel we know right away, sometimes it develops slowly, sometimes we only realize when they’re gone.

When you become a parent, you lose control over your life. This is not an experience for everyone. It’s certainly not something to do because you feel like you’re supposed to have kids.

I made these choices for me, not for my parents or society or because they just happened. I don’t know how it would feel if I had not. I didn’t want to have a disabled son. I dreamed of all the traditional things we imagine with being the father to a son, all those movie moments. That’s not what the universe had in store for me, but I love my life and my family and it all feels right, even when it’s so hard.


Written by Guest Author
The Caregiver Space accepts contributions from experts for The Caregiver's Toolbox and provides a platform for all caregivers in Caregiver Stories. Please read our author guidelines for more information and use our contact form to submit guest articles.

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  1. So very true … nothing prepares you for the challenges of parenting a disabled child … NOTHING!!!

  2. So very true … nothing prepares you for the challenges of parenting a disabled child … NOTHING!!!

  3. so true — beautifully and honestly written.

  4. so true — beautifully and honestly written.


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