A year of living with silent reflux…

My bright and beautiful baby girl was one on Tuesday, which is obviously a cause of great celebration.

However, amid the fun of family parties, pretty dresses and a seemingly endless sea of pink, there was another milestone to acknowledge – reaching one means that she has been in almost constant pain for 365 days.

And that does something to a person, to a mother, to know that this life you created, this baby you struggled to conceive, has suffered.

When people ask ‘how has the first year been?’, I tell them, honestly, it has been ‘hard’ but that doesn’t seem to be the done thing. Some respond with sympathy and acknowledge that it has been a rough ride but others say things such as ‘well bringing up children is hard’ or ‘my baby cried a lot too’ and, even though I know it probably comes from a good place, it feels like they are trying to minimise what it has been like, for her and me.

Of course I know that it could have been much worse; that eventually she will grow out of her silent reflux and hopefully many of her allergies and intolerances to live a happy and healthy life.

I am aware that there are many children in this country and around the world, in war zones or areas of real deprivation, for whom silent reflux would be the very least of their troubles.

And I know, too, that in all likelihood she won’t remember her first year of screaming and sleeplessness and misery.

But you know what, I won’t forget.

Yes, I’m sure it will fade as we make new, hopefully happier, memories, but for now, at this moment, when people ask how the first year has been, infant reflux is there chomping huge bites out of any happiness and to say anything other than ‘hard’ would be a lie.

It’s been one entire year where I have failed as a mother in my duty to protect her from pain, it’s 365 days and nights when I haven’t been able to do one thing to make her feel better.

I’ve been backwards and forwards to doctors and hospitals, putting to one side their barely concealed disdain for what they clearly see as an overreacting first time mum, to fight – and it has been a fight – for someone, anyone, to help my baby.

I’ve held her while she screamed to the point she choked or went hoarse and sat up night after night as she wakes every 10 minutes writhing in pain.

I’ve caught handfuls of sick, changed her 10 times a day and had weeks where I don’t own any clothes that aren’t stiff.

I’ve filmed her pain, fighting the need to reach for her as her bright blue eyes implore me to make it go away, simply so I had proof to show the doctors that I’m not making it up.

Never a patient person, I have discovered an endless supply, especially when, early on, she became breast and then bottle averse, refusing to take even the smallest of feeds.

When she arched and screamed and batted bottle after bottle away I remained mostly calm, despite panicking inside that she was losing more weight.

And when, after many months, I was so tired, so utterly exhausted, that I could have stepped in front of that bus on a bitterly cold day when I had walked for miles and miles, zombie like, in a bid to get her to sleep for even a few minutes, I didn’t, even though it seemed like the best, or at least easiest, option at the time to stop her suffering.

When I say things have been hard and people tell me to ‘be thankful’ for what I have, do you know what that does? It makes me feel even worse, a horrible person because I haven’t been able to suck it up, put on a brave face and say this has been the best year of my life.

And I wanted it to be. I really did. After the loss of two pregnancies, I longed for a baby to the point it was all I could think about.

Finally, when she was here and alive and healthy, I thought ‘now, I can enjoy her’.

I tried not to be hurt that I needed an emergency c-section rather than the natural water birth I was hoping for to rid me of the terror of the medical miscarriage the first time round.

I told myself the many other things that didn’t go to plan were of no consequence because I was a mum now and it wasn’t about me anymore but her.

But then silent reflux hit, robbing us of months of bonding in favour of simply surviving.

I am in awe of the fact that she has grown into such a loving, generally happy and funny little girl despite all of this.

When her face lights up as I enter a room, even if I’ve been gone for one minute, I feel like a rock star.

As she toddle-runs towards me and throws herself at me for a cuddle, burying her head into my shoulder or more recently trying to give me a big sloppy kiss, I feel truly loved and, in that moment, like maybe I am not such a bad mum.

So you see, when you dismiss what I have said to paint a rosier picture, listing all the things I have to be thankful for, it doesn’t help because you’re preaching to the choir.

I get it, I do. I will be forever thankful for my baby girl. But that doesn’t mean I can’t acknowledge that it’s been largely rubbish first year. The point is we are still here, still fighting, and that is also something to celebrate.

A fellow reflux mum, Hayley Edwards, has launched a petition to calling for changes to the way reflux babies (and parents) are dealt with. To help, please sign here.