Minutes or Hours

My Darling Mojo, Today it is two years since you were born. Two years since the moment I held you in my arms for the first time. At that stage I was expecting it to be the last time and my heart simultaneously flooded with love and broke irrevocably. Oh how we had cried for … Read More

MRI, EEG, OT, OMG

“…and if you can just sign here to say that I have advised you that if anything goes wrong we will do everything we can to save her life” The casual nonchalance with which you can accept a sentence of that magnitude is quite alarming and yet I did and duly signed my (or her) life away. I … Read More

August and Everything After

It’s that back to school time again when despite that fact that it’s been 15 years since I left school I am overwhelmed by the desire to buy stationery and new shoes. I love September it feels so full of promise, potential and fresh starts, exactly how we are supposed to feel about spring?! The … Read More

Diagnosis Day #2

So here we are again, 2nd August. Diagnosis Day. Today marks two years since I sat at the table in our old flat and wrote down semi lowbar hollow prosenkefaly. That’s exactly how I wrote it, whilst in my best telephone voice agreeing to come and meet the doctor the following morning to discuss our … Read More

The Hospital: An Epic Journey

“Are you okay?” “Yeah, I’m fine” I was being asked by the A&E doctor who was treating Mojo early on Monday morning as she lay writhing in apparent pain, pouring with sweat and screaming. I wasn’t fine. Mojo was very unwell indeed following a brief and violent tummy bug and we were here again, to do battle with her sodium … Read More

Let’s face the Music!

There is something fundamentally emotive about music. It’s well known that babies respond to music in the womb. There is just something about a beat and a melody which captures us. The right song at the right time can evoke tremendously strong emotions. I’ve always been a fan of sound tracking my life. Anyone who lived … Read More

Swings, Roundabouts and other Cliches

I sometimes worry that my blog posts are a bit like those sympathy-vote back stories they do for X-Factor contestants. Not least because I find myself thinking of words like ‘rollercoaster’ and ‘journey’. Inescapable really but do feel free to pick me up on any excessive superlatives as I continue to keep you all updated. The last … Read More

Failure to Thrive

FTT is an acronym which has appeared on many a note about our girl and it stands for Failure To Thrive. There are many many MANY things I hate about the term. Dealing with the obvious one first, it can’t be a good thing, right? Everyone wants their children to thrive. The thing that gets me … Read More

Bring it on!

Back in the darkest days of our pregnancy I used to daydream about our baby, how she would be the exception to the rule and she would survive. If I allowed myself, I would imagine her coming home with us and being with us for Christmas. If I was getting really carried away I would … Read More