Diary of a Disabled Dad

Dear Diary… No wait… Day 1… nope that’s not right either… where do I start a story like this? It’s been two years of being a Dad already, and I can’t find the right words to start talking about how amazing this journey has been, or how to put my finger on where it began! But this is just the start, right? An Introduction, an outline of what’s to come!

My name is Humphrey, and before becoming a dad, I was a photographer, a content creator, a drone pilot, a Wellingtonian with a coffee addiction, a motivational speaker, and an accessibility specialist working in the video game industry! Now? I’m a disabled dad! Honestly, between our extremely busy little one, Reiha is her name, and my own health challenges, that’s most of my spoons used and then some every day!

Ironic that I can’t quite put my finger on it, because I don’t actually have any fingers I can use – I have a rare genetic condition called Epidermolysis Bullosa (EB), what this means is basically my skin is really fragile, and gets damaged easily, (especially by tiny fingers with sharp nails – but that’s for later in the story!) EB also causes scar tissue which has slowly over my lifetime, caused my fingers to fuse and leave me with clubbed fists and only a small use of a partial thumb – which is how I’m typing this out right now!

At 40 (now 42!), I thought I’d overcome, avoided, or found a way to get support through all the challenges in life that my disability liked to throw at me, but I never could have imagined the new frontier of challenge that becoming a parent with a disability would throw my way. The joys, the laughter, the frustration, the fears, the exhaustion, or the love… it’s true that until you are a parent, all these things don’t make sense.

This blog, this journey, these words that I’ll share with all of you, are going to form my best attempts at expressing what all this has been like for me, and hopefully someday, be something my daughter can read too – to know how much she means to me, and the amazing light in our lives she is. A light that we knew we wanted and went through all sorts of challenges to find (more for future chapters!) but never could have imagined how bright it would be.

Diary of a Disabled Dad is a way of putting down in words the things we’ve been through, because when we started on this journey, I got that all too familiar feeling, that the world of parenthood was as full of accessibility barriers, and ableism, as the rest of the world has been all my life. But I want other prospective parents out there to know that you belong here too. You belong amongst the sleepless nights, the piles of laundry and nappies, the toys that get stuck in the spokes of your wheelchair, the hugs (that are sometimes just a little too tight!), the laughs, the dances, the tantrums, and the love.

It's so true that it takes a village and a community to raise a child, but that’s even more true as a disabled parent. We’re so fortunate that our village has included our neighbours, Mountain Buggy! We’ve been friends with the team since our first baby, our four-legged fluffy boy, Whisky the husky, was a model in their luxury campaign many years ago. It’s been amazing being able to tap into their experience and support, figuring out which of their range of strollers would be the most safe and accessible to use! Our Mountain Buggy Cosmopolitan stroller has been amazing, and Campbell, the owner of Mountain Buggy, even helped create an amazing set of gloves to help safely hold my hands to the handlebar of the buggy to be able to more confidently and easily take Reiha on outings!

We’re going to talk about all of it in time, and not necessarily in this order, and it’s a story that’s still being written in every adventurous and exciting day with this busy little one! - Posts about where it all began and wanting to be a parent and finding that through IVF

What changed when we realised, we were going to be parents! -

• Those early newborn days
• The fear of not being enough for them
• The fear of mortality and how to overcome that anxiety amidst regular hospital visits and surgeries for my condition
• Finding the joy in being able to do the best you can every day
• The hacks the products and the gear
• How do you teach your baby to be careful of dad but not make them afraid of hurting him?
• all the things!
  

And also, answering any of your questions that might be sparked by reading all of these! You can reach out any time if you want to pick my brain on a topic, share your story, or talk about these things further!

Thank you for reading this far – I guess we did figure out where to start didn’t we? Now to get writing the second entry! See you in the next one…

Mountain Buggy® cosmopolitan™ pilot
Humphrey Hanley, father of one
New Zealand