Over the last few weeks, with our love for Junebug growing every day, Erin and I have been thinking a lot about difference and disability. I was trying to find support hotlines for those facing potentially terminal prenatal diagnosis and came across an interesting dynamic. When I looked around to see where I could find support, it turns out that there aren’t as many people as I thought, who when faced with the same information—your baby will be disabled if it survives—would make the same decision we did—to carry to term and hope that they will survive.

Even as someone who is pro-choice and believes that every woman has a right to choose, it’s been a bit of an adjustment to come to terms with the criteria that influence those decisions.

A friend recommended a documentary called ‘A World Without Down’s Syndrome’. It discussed things like NIPT testing and how 9/10 women in the UK would choose a termination when told their baby had Down’s syndrome. Iceland “boasts” a 100% termination rate for babies with Down’s syndrome, and Denmark has said they want to eradicate the condition by 2020.

I can understand the fear of the unknown and the unexpected. It’s not something many people have experience with, they can’t imagine it and it doesn’t fit what their hopes, dreams and expectations are for a baby and a family. It’s not a condition that’s regarded as ‘healthy’. It’s not seen as a positive, it’s perceived as a disease. In the messaging groups I am a part of, it’s so common to see mums-to-be talk about their ‘Down’s scare’, and how they are “SO RELIEVED” it wasn’t Down’s syndrome—all without recognising their audience: many mums in the groups are over 35, increasing the likelihood that they might just have a baby with the condition, and then there’s us, who would LOVE for that to be the case, because Down’s syndrome is ‘compatible with life’.

99% of individuals with Down’s syndrome report being genuinely happy. 97% like who they are. Those are some staggering statistics. How many of us ‘healthy’ folk would be confident saying the same? No family is without its issues and challenges. Not one. Whether it has a disabled child or not.

Health, or the perception of health, isn’t the sole indicator of happiness, it’s just one ingredient, and it’s variable. Because what is ‘healthy’ anyway? Ten fingers and ten toes at birth means absolutely nothing. There’s no way to guarantee your baby will be ‘perfect’ because that’s not how people work. Perfection is the acceptance of the potential for faults.

People are not immune to life’s hurdles and curveballs just because they are born pink and proportional, or because their blood tests showed a very low indication that they will have certain conditions. We have no idea what life holds in store for us or our families.

There’s a children’s book about dwarfism that opens with the phrase: We’re all different, it’s what makes us the same. It’s so simple, but so incredibly true. I constantly read about families who were devastated by a prenatal diagnosis, thinking their child’s disability would mean they’d never have friends or amount to anything—only to have the baby thrive, and change their lives and perceptions in the process. It’s beautiful to see.

It does seem ironic then, that even though we welcome Junebug with open hearts, minds and arms, that isn’t enough, and we may not have the time with them we want to have. I guess that’s not the lesson we’re supposed to be learning on this journey. It’s the fact we may lose our baby, not that we need to accept their differences, that is our challenge—and the fact we may never have the answers we want.

We’ve heard that preliminarily, our eight-week exome genetic sequencing test has shown no mutations for skeletal dysplasia and they’re continuing to test. Talk about finding needle in a haystack—especially when there might not even be a needle. It doesn’t seem to matter what eventualities I imagine—there’s always something I hadn’t considered that crops up. I feel like I play this imaginary game of whack-a-mole where I try to slay as many terrible scenarios in my mind as possible, but I can’t keep up and some sneak through.

But, on the biggest plus side, it means Erin can hop on a plane later this week to be here with Junebug and I. If this is the only time we have together, we need to make the most of it. Being away from him for the last month has been rubbish. Discovering so much about one another’s beliefs about our baby and how we feel about life, disability, difference—everything—has made me realise what marriage and family are really about. The support we’ve had… there are no words to describe the kindness and love around us. We are surrounded by so much compassion and patience, and it lightens our load every day.

Last Friday I got a chance to say hello to Junebug at a short ultrasound scan. Their beautiful face and miraculous shapes are just amazing. We’re still waiting for our growth scan where they’ll look at their chest again, but all we can do is wait and try to be present in the moments we have now. At the scan, they were moving around, practicing taking breaths and had done a complete 180 to a breech position. That’s fine by me, swim around as long as you like my little lovie, you take all the time you need to keep cooking and growing—no need to head to the door just yet!

Next week will be the big scan, after which we’ll need to start making plans about what to do when Junebug is born. That means thinking about what kinds of intervention or assistance, or palliative care we request. It’s difficult to think about. Sometimes I wonder what I really, subconsciously, believe the outcome to be.

My bump also hasn’t grown, but I’m hoping that’s because just legs and arms have stopped growing and that would account for smaller bump.

Nothing is straightforward, we can’t plan for every eventuality, or build fortresses against them. We just have to roll with the punches and celebrate the good things. As I write this, I’m in a library listening to a room of 30 babies and toddlers sing along to the most incredibly catchy songs ever (have a listen to ‘Baby Shark’ and you’ll see what I mean!) Who knows what their little lives will hold. But for now, they’re clapping their hands, stomping their feet and singing about the wheels on the bus and loving every moment. It’s brilliant.