A brief escape

A few weeks before we came home from NICU, the nurses let us take Samuel out in the NICU pram for a walk. We didn’t go very far as we were quite nervous but we felt very proud pushing our beautiful baby around the neighbourhood. It was the first time we’d been properly alone with Samuel and it was wonderful.

The NICU 'chav pram' (apologies to any Burberry fans). His little friend is Grannie Bear (named after Grannie who knitted her).


Samuel's cardigan and bobble hat were knitted by Grannie.

All we’ve ever known

I’ve been reading more of the #definenormal blog posts which are part of the Define Normal blog hop challenge at Just Bring The Chocolate. I can relate to all of them in some way and to me, they sound all very, well, normal.

And that’s the thing. I’m so used to our little world, our little bubble, that sometimes I struggle to step back and realise what isn’t perhaps the mainstream normal.

It might be because Samuel is our only child. This is our only experience of being parents & having children. This is all we know.

Samuel has always had seizures. Medicines have always been a crucial part of Samuel’s care.

Samuel has never given us eye contact. He has never smiled. Never laughed. The only time we see him smile is when he is having a seizure and boy he would have one fantastic cheeky smile. But we’ve never had that so it doesn’t feel strange. But it does make me feel sad.

We get asked if Samuel likes this or likes that. We don’t know. How do you tell if a six week baby likes something? Sam might be 17 months old but is only really like a little baby.

But that is how he has always been. This is our normal.


Guest post: A real yummy cuddle monster

Samuel and I met my dear twitter friend @deborabora for the first time this week and she’s kindly agreed to write a unique guest post. A Samuel cuddle review:


We need 4 hugs a day for survival. We need 8 hugs a day for maintenance. We need 12 hugs a day for growth.
—Virginia Satir, family therapist

And when one of those cuddles is with Samuel, I swear you get your 12 hugs in one.

I’m not forthcoming in requesting cuddles from people’s children. As much as I would like a hug I tend to wait to be asked. I’ve no real idea why but something to do with watching newborns be passed around a million people getting every increasingly grumpy. However, even when I’m the only person in the room and itching for a cuddle, I can’t bring myself to ask. Its silly really.

Anyway, I digress.

From the word go, as soon as I saw a sleeping Samuel, I wanted a cuddle and so when he stirred and the lovely Zoë asked if I wanted a cuddle I jumped at the chance.

As Zoë has said before in her blog posts, you need to support Samuel’s head, so need to hold him like a younger baby. But, unlike a younger baby there is more to Samuel which makes that cuddle a real yummy hug. Like the difference between trying to hug a stick of a person compared to someone who has more meat on them making them, and Samuel, a real cuddle monster.

To top off the gorgeousness of his cuddle he had the most tickle-able toes. I frequently found myself drawn to tickling his little toes.

My only downside is myself. I was nervous…like I am when I hold anyone’s child for the first time. I was stiff and behaving like I’d never held a baby before. Which meant, my arm soon began to ache and I had to give up my cuddle much sooner than I’d have liked. However, having had my first cuddle…I’m addicted and want another! Next time (if I’m allowed a next time of course), I hope I can offer a more enjoyable cuddle to Samuel and remember to relax…I’m not going to break him (I hope), and perhaps I can help him grow a little as he helped me grow a lot.