Every story in The Design Files’ Family column is inspiring, but I must admit being particularly awestruck by journalist and new mum, Nas Campanella.
Nas lost her sight when she was six months old (when blood vessels burst at the back of her eyes, damaging her retinas), and she also lives with Charcot-Marie-Tooth—a degenerative nerve disease causing limited sensitivity in her fingers, which makes her unable to read braille.
Speaking to Nas, I was instantly taken with her generous and candid responses regarding her journey to motherhood today. From enlisting audio recordings of family and friends to enable her to read aloud to 11-month-old Lachie, to tracking his movements by attaching small rattles to his wrists and ankles, Nas has successfully navigated every barrier thrown her way with inventive thinking, tenacity, and the help of a great support system.
Have you always wanted to become a mother?
I never thought I’d be a mum, actually. I didn’t really think I’d find anyone to settle down with, and who’d want to have children with me, to be honest.
When I did meet Tom though, we pretty quickly affirmed that we wanted to be parents at some point in our lives.
Was your preparation for motherhood the same as any other parent?
Definitely not. The prep started a couple years before talking to other friends with disabilities who have had kids about their experiences, the equipment they used, and the services they engaged. I also asked them about the things they had faced—any prejudice, any stigma—just so I knew in a sense what we were in for, particularly myself, from an attitudinal perspective.
More broadly, I had to really think about the fact I have multiple disabilities, and ask, how are those going to be impacted, and how they will impact being pregnant and being a mum. I’ve got blindness, but I’ve also got a muscle condition called Charcot-Marie-Tooth that basically impacts sensitivity, muscle tone, balance, and stability.
I had to really think about and talk to experts about how I navigate those things, so I used an exercise physiologist for a couple of years to really get my body ready and make sure I was physically able to keep my balance when I was pregnant.
As my belly got bigger when I was pregnant, I was way more prone to falls, and I did fall quite frequently, but I probably would’ve fallen more if I hadn’t done all the balance and strength work before. It was also to make sure that I could actually pick up a baby and do all the necessary bits and pieces like bathing, nappy changing, and dressing.
Now that Lachie is nine kilos, that work has become so important. Other people pick him up and think he’s an absolute lump and really heavy, whereas I don’t.
I also worked with a physio—which I would recommend to any person looking to get pregnant—and an occupational therapist who supported me in preparing when I was pregnant.
I found a parenting group that was aligned to my specific needs through Vision Australia. They run an eight week course on anything and everything, from the physical side of how to look after a baby including cutting toenails and fingernails, right through to the stigma people might face, and just being a support for each other.
How has motherhood compared to your expectations so far?
I knew I would love being a mum, but I haven’t missed my previous life for one day that he’s been born. I love waking up and hearing him make little noises. I love just playing with him all day. I’ve had almost 13 months off work and I’ve not been bored. I’ve just loved being here as he learns new things and cheering him on.
I also love that it’s given me this whole new group of friends through mother’s group, as well as a confidence that I didn’t have before. I’ve always been a fairly forthright person, but it has given me more confidence because I know I’ve tackled one of life’s ultimate challenges.
What do your days with Lachie currently look like?
We have breakfast and do the bath routine generally in the morning, then we have a long play crawling around.
I’m on my own in the mornings—Tom is at work at 4am [as a presenter on Breakfast on ABC NewsRadio]—so we usually do an activity, whether that be meeting up with mother’s group, or going to a music class, swim class or GymbaROO. We sometimes go out for a fitness class with my exercise physiologist at the park where Lachie will join us for a crawl on the grass, or he’ll sit in the pram playing with toys. Other times a friend might take us for a walk or coffee.
The afternoons are usually a bit more quiet. After Lachie’s big nap in the afternoon, we usually have more of a play and do story time—just lots of time at home.
Your disabilities restrict you from driving and using a pram independently. Does this limit how you’re able to get out of the house together, and do you find that challenging?
I’d say that’s what’s been the biggest challenge for me. I have lost a bit of my independence because I can’t get out of the house on my own with Lachie—I have to organise things and I have to wait for people. At times that can be incredibly frustrating, but I have also become really good at forward planning to check who’s available and check if we’ve got enough time planned out of the house each week.
We’ve got a pretty good diary of people—whether it be colleagues, friends or family—who come and help us do things in the morning. We’ve also got some beautiful people who we pay to help us—a doula and a babysitter—who come and do anything from doing the groceries, right through to going on a 4km walk and grabbing a coffee.
It has been a little bit hard to come to terms with not just being able to pop out of the house with Lachie, but I also know that that’s very temporary and that it will change. In a sense, it’s been a blessing in disguise, because it means that we’re always out with people. The music classes are not just great for him, it’s great for me, because I get to chat to other parents and be around people as much as he does.
I’ve read that friends and family have recorded audio of themselves reading children’s books that you’re able to repeat to Lachie. Are there any other aids that have been able to help you as a parent?
Magnetic onesies have been great, so instead of press studs and zippers, I’ve been using ones that have little magnets, which I recommend to anyone, especially at 1am when you’re delirious!
We have talking thermometers and talking scales to measure food. There’s also squeaky shoes and little rattles that I put on Lachie’s wrists and ankles so I can hear him when he’s moving around. Most of the toys in our house have bells or things that make noise so that I can hear where he is.
We’ve got textured mats as well, both for the change table and the floor, so that when he was rolling and starting to move around, I could hear where he was.
You must be exhausted!
I am always thinking about what I need to do next, and I think that that can make you exhausted. It’s also physically tiring being on the floor crawling around with Lachie; I don’t want to stand up and be walking in case I step on him or knock him over, so I’m spending a lot of time on my hands and knees. I’ve got these massive bruises on my knees that are often quite sore and probably aren’t a great look, but hopefully it looks like I’m on the floor with my son all the time.
I think one thing that prepared me for the tiredness was shift work. It wasn’t like I was working nine to five and all of a sudden I was getting up multiple times a night or at strange hours in the morning. I was used to that constant feeling of jetlag, so that wasn’t a huge shock to the system.
Do you feel Lachie senses the difference between yours and Tom’s needs?
Now that he’s 11-months-old, I really do think he’s noticed that the way to get my attention is a bit different to dad. When I’m feeding him, he will actively make noise so I know where his mouth is. When he wants something, he will reach towards me and grab it, or he’ll pull on my shirt. I don’t know if he knows what he’s doing, but he’s using physical cues to get my attention, which is something that he obviously doesn’t need to do with his dad.
He’s also a lot more patient with me. He will stay a lot more still with me in the highchair or on the change table, because I think he knows that I take a bit longer to do things and he sort of wants to hurry it up himself! He just thinks, if I’m a bit more patient, mum will be quicker.
We also use language, so Tom’s already explaining to Lachie that he needs to pick up his toys because mummy can’t see, and I tell him that my hands are my eyes, so he needs to put things in my hands. We obviously know that he can’t understand what we’re saying right now, but we wanted that language to be very ingrained from day one. I talk to him constantly so that he knows my voice and so he knows that we need to be a vocal family.
Do you have plans to return to work and how you’ll manage childcare?
Yes, I’m going back to work in mid March. I’m going back full-time, which is scary, mainly because every time I tell people that they’re quite shocked! I think it will be good to rip off the bandaid and go back though. My theory is let’s go back full-time and if it doesn’t work, we’ll just reduce my days, rather than going back and part-time and then wanting to go full-time and having trouble finding care.
We’re really lucky that we’ve got two very supportive sets of parents. So Lachie will have a day with Grandma and Grandpa, then Nonno and Nonna, then three days of daycare.
Have you made a conscious effort to share your experiences of motherhood on Instagram?
Yes, it was a conscious decision, and something that I talked about with my husband to make sure he was comfortable with it as well. There was a lot of discussion about whether I should do it and how that would impact our child.
Ultimately, I have always used my life experiences, both good and bad, as a way of educating, empowering and teaching others—both disabled and non-disabled. I think in the position that I’m in—where I have a platform and the means of talking about these experiences to break down stigma and change the way people with disability are perceived—it would be silly not to.
I hope when Lachie’s older, he’ll be proud of the work that we, including him, did around this space, because I think there have been lots of people I have spoken to who have had children many years ago who faced a lot of criticism or were made to feel guilty for wanting to be a parent because they live with disability. I want to make sure that in the future, people with disability don’t feel like that again.
People with disability have been parenting for decades and they’ll continue to do so, and they’re doing it well.
What’s been one of the greatest joys of Lachie’s life so far?
I loved feeling him roll for the first time and the first laugh—it was the most beautiful sound. Overall I’ve just loved having uninterrupted time with him this year to learn and grow together.
What are your hopes for Lachie’s future?
I just hope he grows up to be a confident, resilient little kid who feels comfortable to be whoever he wants to be. I hope he’s in a world that we can all be proud of—one that I hope is accepting and tolerant.
Once upon a time, I had lots of friends who had never met someone with a disability, and I would like for that not to be the case with Lachie. I would love for him to look around his classroom and see there’s lots of kids all with different skin colours and from different walks of life.
I’d love for disability to not be some sort of abnormal novelty, for it to just be part of our society that’s celebrated, embraced, and just a beautiful thing.
This interview has been edited for length and clarity.
