Our next scan is in three days and I feel I’m close to screaming into the street, “I DON’T WANT TO DO THIS ANYMORE.” I’m numb. So is Erin. We sit down to talk about how we feel and neither of us have the words anymore. The further we get from the last scan, the more numb and surreal everything feels. But the closer we get to the next, the more that reality starts to sting. With no new information, we’ve run out of worst case scenarios. I feel like we know what they all are, what’s left to say? With our families, with friends, I can hear how calm we sound, how collected and detached as we run through the motions of what we’re going through without wobbling a lip, because it’s all second-nature now. We can almost fool ourselves into thinking that we’re at peace with everything. We’re not. I’m not. There are moments that I don’t know if it’s anxiety or Junebug kicking around in the pit of my stomach.

I have been reading and writing on forum boards about skeletal dysplasia and found out more about the condition that I wouldn’t have learned if it wasn’t for brave mums sharing their experiences. I was reading up on kyphomelic dysplasia and cartilage hair hypoplasia, two conditions compatible with life, that might fit some of Junebug’s symptoms. They both feature curved femurs, but also list out a range of other conditions like immune deficiency, which adds another level of complexity and worry to how we envision what the future holds. I’m worried now about the move from Hong Kong to New Zealand—I keep thinking about population size. In the US, 27,000 people a year are diagnosed with skeletal dysplasia. It’s such a big population that there are more cases to document. Hong Kong only has 7.5 million people, and it seems that most (not all) tend to terminate when presented with this diagnosis, so there are fewer documented cases. New Zealand is tiny by comparison, 4 million people. I worry that they’ll have even less experience to go off. I just have to keep reminding myself that these conditions are so rare, there’s not much you can do from anywhere, really. It’s so hard to get a diagnosis, regardless of where you are, and when you do, it’s mainly because the stars have aligned in right place, right time, right doctor.

I’ve been researching resources and experts, but then find myself feeling that it’s a little hopeless, if we don’t know what the prognosis for Junebug’s condition is.  

I try to picture what I’m most afraid of, but the truth is whatever comes next will find a way to be the one scenario we hadn’t imagined. So, you keep pushing the limits of your imagination, to darker and more bizarre places, trying to cover every possible eventuality. I squeeze so much whirring into every spare minute that days that seem so full and heavy.

I just want to catch a breath and wake up from this now.

But then my phone buzzes with a message of someone thinking of us, and we receive a card in the post urging us to take it day-by-day, and we’re gifted the most beautiful handwoven words of hope and clarity from a friend, and those small moments (which are huge to us) of acknowledgment untether us from the weight of our situation and lift us to a place where maybe, just maybe, everything will be ok.

This is scary, but we are still so incredibly lucky.