A rare life

I love someone rareThe 29th of February is World Rare Disease Day. The day is intended to raise awareness for rare diseases and to improve access to treatments and medical representation for individuals with rare diseases and their families.

Miss Z is rare. So rare, in fact, that the doctors aren’t sure what she has – they’re just confident that it isn’t any of the usual suspects. Usually, being rare isn’t a problem – her doctors and therapists and teachers treat her as Miss Z, not a diagnosis. However, being rare leaves Miss Z without a prognosis, without any idea of what might happen in the future. It also means that the doctors and therapists and teachers who haven’t met Miss Z before always tend to be a bit befuddled and struggle to find a box in which to put her.

It also means that we, as her family, live a less than typical life. Life is never dull, or easy, or straightforward with Miss Z around. But it can be quite beautiful.

To give you a better understanding of what being rare means to us, I have decided to give you a glipse of our daily lives during the 25 days leading up to World Rare Disease Day. We have a very busy February ahead of us, so there should never be a dull moment!

I was going to kick off my 25 days of living rare by telling you about my big accomplishment for the day – getting a date for Miss Z’s surgery to have her GJ tube re-inserted (and yes, I do mean re-inserted – she got it last Monday and managed to accidentally pull it out on Saturday). However, this evening Miss Z and I had a mishap, and I know that mishaps are always more interesting than achievements (especially when the achievement involves hospital bureaucracy), so….

Miss Z and I were both tired at bedtime tonight, but everything went smoothly. I even remembered to take Miss Z’s feeding connector tube downstairs with me when I put her to bed. I like to have her all connected up, so that I can give her meds and her feed later in the evening without waking her up. Usually, I forget the tube upstairs, which means I have to run back upstairs for it – not a big deal, but one of those little, annoying things in life.

Tonight, however, I was on the ball and remembered to grab the tube before going downstairs. Miss Z and I read a bedtime story (we’re very much into Lynley Dodd at the moment) and then I put her to bed, connected up the feeding tube, and kissed her goodnight.

An hour later, she was still awake and rocking around in her bed, so I went downstairs to check on her. She seemed a bit uncomfortable, so I rolled her onto her other side – which often helps her go back to sleep. Instead, I discovered a puddle. I had failed to close the clamp on the connector when I’d connected it to Miss Z’s tummy and the med and food ports were open too. In short, I’d managed to drain the contents of Miss Z’s stomach out onto the bed. Yes reader, I un-fed (de-fed?) my child.

Miss Z wasn’t terribly concerned about the puddle, but she did get very cross when I heaved her out of bed in order to change the sheet and her pajama bottoms. She is back in bed now, warm and dry, fast asleep and keeping the contents of her stomach to herself.


Leakage – though not from un-feeding. And a view of the connector tube.


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