What a difference a drug makes

I’ve often joked that Benjamin is my easiest child. At least, alongside a five-year-old who will burst into tears if you suggest she watches CBeebies instead of Youtube (or, God forbid, actually turn the TV off), and a one-year-old who will literally climb the furniture to get at anything she shouldn’t have. He doesn’t answer … Continue reading What a difference a drug makes

The best of both worlds

It’s a common complaint among carers of children with complex needs: I spend so much time being a nurse, being a therapist, I sometimes don’t get a chance just to be a parent. I don’t want only to interact with him through a feeding tube, a syringe, and a set of physio exercises in a … Continue reading The best of both worlds

Brought up short

She pulls her knees right up to her tummy, froggy-style, then kicks them straight again, quickly, over and over, learning the strength in those chubby little thighs. She’ll be rolling over soon. His legs are sometimes floppy, sometimes tense and rigid. He doesn’t move them voluntarily; they will likely never bear his weight. She brings … Continue reading Brought up short

Bigger, better, bolder

April 29th 2016 is the fourth annual Undiagnosed Children’s Day, and it promises to be bigger than ever. It’s the third UCD since our own undiagnosed child, Benjamin, was born, and only the second since we found out that Undiagnosed Children’s Day and the initiative for undiagnosed children, SWAN UK, existed. A fitting time to … Continue reading Bigger, better, bolder

Sometimes I just don’t know who to call…

To the many professionals involved in my son’s care, Thank you. As you know, Benjamin, in common with most other children with rare, genetic or undiagnosed diseases, has a complex array of physical, medical, mental, behavioural and social problems, arising from an unknown underlying cause. These issues are clearly co-occurring and interrelated, but determining how … Continue reading Sometimes I just don’t know who to call…

To tube or not to tube

‘Failure to thrive,’ it used to be called. Nowadays it’s ‘faltering weight.’ Both terms to strike fear into a mother; neither does justice to our daily battle to keep Benjamin’s weight within the realms of ‘normal,’ our weekly visit to the centile graph, the results of which are dutifully emailed to the dietician in case … Continue reading To tube or not to tube

Playtime

As my friends on Facebook will know, we reached a major milestone this week. And as other special needs parents will appreciate, what is a milestone for us is something that many neurotypical children do so automatically that it’s barely worth noticing. He started playing. At least, that’s what I’m going to call it. He … Continue reading Playtime