Brave, bruised, and better for it

With apologies for the spoiler, I can hardly believe it went without a hitch. Back in the depths of winter, when Benjamin’s health appeared relatively stable, we rashly booked ourselves a summer holiday, more than two hours drive from our local hospital. Twelve hours drive and sixteen hours ferry away from our local hospital. Abroad! … Continue reading Brave, bruised, and better for it

Fake it ’til you make it

Someone once told me that, however bad you're feeling, simply smiling will make you feel happier. It’s to do with the physical action of moving your face muscles triggering neural pathways involved in emotion. Or something. I don't know whether it’s scientifically proven, anecdotal, or just bullshit. Anyway, I wonder if the same can be … Continue reading Fake it ’til you make it

Captain Endurance and the Imperturbable Girls

I have to admit, I’m not really up on my superheroes. I understand things have moved on a bit from Thundercats (I wasn’t allowed to watch He-Man and the Masters of the Universe because it was on ITV and therefore infra dig). I’m painfully aware of the PJ Masks, thanks to my six-year-old and YouTube, … Continue reading Captain Endurance and the Imperturbable Girls

Torn

We are just back from weekend trip to Aberdeen. I say ‘we’. I mean my husband and I, and the two girls. Our first trip away without Benjamin. I think we pulled off a pretty good impression of a ‘normal’ family on a ‘normal’ trip. Dare I say 'minibreak'? A few bags slung into the boot … Continue reading Torn

The long haul

The world is closing in around us. Around my son, his siblings, and me. My children are all growing up so fast. I can hardly believe Benjamin is four – he’ll be starting school next year. My eldest is already a grown-up P1 girl and loving it. And my littlest is walking, running, and jumping … Continue reading The long haul

What should a four year old be?

At four, Benjamin should be a cute, tousle-headed, tearaway by now. In and out of the paddling pool all summer; under my feet all winter. Chattering nineteen to the dozen. Learning to pee on a ping-pong ball. Spoiling his big sister’s games, and being too rough with his little sister. Big enough to be making … Continue reading What should a four year old be?

How much is too much?

So far this week Benjamin has had visits from his physio, the community nurse to change his gastrostomy button, the disability social worker, and the visiting teacher for the visually impaired. I've taken him to the Sick Kids for a respiratory consultation, the GP for a flu vaccination, into Edinburgh for an early years sensory … Continue reading How much is too much?

A day in the life

As a change from my standard, introspective musings, I thought I might try and describe a typical day in our household. Of course, there is no typical day. Some days we have appointments for Ben, some days we have playdates for Jackie; some days Ben is sleepy all day, some days he is hungry all … Continue reading A day in the life

Just the two of us

Some people say that your first child is the biggest shock to your lifestyle. Others say that one child is easy, she fits into your life; having two is the game-changer. Still others that two is manageable, three is when you don’t have enough hands. For me, when we first had Jackie, she took up … Continue reading Just the two of us

Each day as it comes

On the whole I manage to avoid thinking about my own future, but it’s hard not to dream for your kids. On Friday I took the baby to our third outpatient appointment of the week; my husband took our little girl swimming. The dietician was running an hour late (only to tell me to carry … Continue reading Each day as it comes