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

Being Benjamin’s mum

I don’t know why I still subscribe to them. Those weekly emails from the parenting websites listing the milestones my children ‘should’ be reaching at three weeks, three months, three years. It’s weaning time! … How to get your toddler to sleep … Starting school … and, this week, 50 reasons why it’s fun to … Continue reading Being Benjamin’s mum

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

Wishful thinking

I’m sure he’s purposely trying to move now, to influence his environment. When I lay him on the floor he twists his body as if trying to roll over. Sometimes I find him gripping his toy or his blanket. When I hold him I think I can feel his arms curling round, holding me back. … Continue reading Wishful thinking

What’s in a name?

 The first time we knew something was wrong, two weeks before his due date (a torrid time, but that’s for another post), we were told his condition was “microcephaly with simplified gyral pattern.” A bit of a mouthful, the consultant said, so we could shorten it to MSG. Great. My baby has monosodium glutamate, “the … Continue reading What’s in a name?

The slow smile

It’s an amazing moment when your baby smiles for the first time. It’s also amazing when they do that first, definite, personal smile, the one that says, “That’s my mum, I know her, I trust her and I love her.” With my first child, it happened after a few weeks. This time, it took seven … Continue reading The slow smile