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Why I Count the 'Small Mercies' With Morquio Syndrome

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She was born at 6:40 p.m. after a 15-hour labor. Her birth was a victory in more ways than one — my first child was delivered via a traumatic emergency caesarean and I fought tooth and nail to avoid the same fate, succeeding in the end with minimal intervention.

I was ecstatic. I felt invincible, untouchable, goddess-like in my ability to make life happen. Every mother deserves to feel that euphoria. It does fade, though. You float through the early days in a cotton fog, feeling your way through it all, then eventually, the fog clears and everything looks different. There’s a very strong chance you don’t recognize yourself. Your relationship changes in ways that you didn’t have the capacity to imagine in the before days, or even during the fog. You’ve arrived in motherhood and everything about it feels so much bigger than you will ever be and sometimes — no, let’s be honest here, a lot of the time — this leads to darkness, depression and crippling uncertainty. The majority of women can relate to this and, if you can, I hope you found your way out. That place has a habit of keeping you down.

However, there’s another element to parenthood that not everyone sees —  other lessons, other obstacles that aren’t part of the same rite of passage. It’s an entirely different beast, a heavyweight brute that demolishes every last ounce of sense you’ve managed to make out of being a parent. The beast I’m referring to, of course, is rare disease. And for us, its name is Morquio.

Morquio syndrome lives in the cells of my daughter. It twists her bones, messes with her respiratory system, and causes her tiny heart to work too hard. With it, nothing happens quite the way that it should, and it never will. We know what Morquio has done to her so far, but we have no way of knowing what it might do in future. All we know is that it won’t ever leave.

It stayed relatively low-key in the early days for us. My daughter wasn’t so different — she just didn’t sit up or walk at the same time as other kids her age. After a time, she learned to shuffle along the floor on her bottom, but by then her peers were running wild around playgroups and friends’ houses, so I had to be vigilant in case she was hurt. As she grew older, though, she wasn’t growing physically and she was susceptible to chest infections that regularly resulted in hospital stays; sometimes, she became so ill so quickly that we were blue-lighted to hospital. Hospital staff would mistakenly assume she was a toddler due to her size and I would have to explain, over and over, the minutiae of a disease that I still didn’t understand. However, as time went on, she began to explain for herself, in her own way, because her awareness was expanding.

Then, there was the first surgery. Her spine was severely curved, so a specialist in Manchester spent several years assessing her and working out the best way forward. In January 2014, she spent 10 hours in theatre having her spine manipulated and straightened with titanium steel rods. The recovery was excruciating. For weeks, she dealt with immense levels of pain while my heart splintered on a daily basis. Morquio was suddenly real. It swallowed everything. It still does. Every day, twice a day, my daughter takes medication designed to prevent her existing heart condition from deteriorating further, but it offers no guarantees. Every week for four hours, she has a needle plugged into a little port in her chest through which she receives an enzyme replacement therapy. Again, it isn’t a cure and it offers no promises, but it was a hard-won treatment and it offers us some hope. Small mercies, if you will — perhaps some growth in height, less fatigue and muscle pain, enough energy to manage the demands of school and, well, just being a kid.

Most of the time, I’m quite skilled at counting our blessings. I like to reflect on what we have to be grateful for because it steadies me, somehow. Rare disease brings with it a lot of isolation, even within the “parent-caregiving” realm, because when you’re around other families dealing with disability, none of them are quite like yours. However, it also brings a particular connection with others in the same boat — a bond that doesn’t give a damn about miles, kilometers, seas, time zones or anything else. It doesn’t even need to be verbalized. Knowing that brings me incredible comfort, and I hope, continues to do so for all families connected by Morquio and rare disease.

In many ways, I’m glad that I write, because it gives me an outlet for so many things, Morquio being one of the most significant. In other ways, I wish I didn’t, because the compulsion to get the words out ultimately means engaging with the beast, and that has one hell of an emotional cost.

Nonetheless, it’s one that I’ll willingly pay — because that’s what we do as parents.

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Getty Images photo via Nadezhda1906

Originally published: January 12, 2018
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