What’s a weekend without the fear?

I (vaguely) remember the days when the fear was brought on by too many vodkas of a Saturday night. These days it feels like the fear is never far away, but it’s brought on by something entirely different. The cough.

A simple huff or puff is all it takes to send this CF Mama (and most others) into a tailspin of chaotic, neurotic worry. And let’s be clear, the fretting freefall doesn’t only happen when Eva coughs. It happens when anyone dares to expel some irritating substance from their respiratory tract in her presence. Anyone whose brain even thinks they might need to bark it out. Because obviously every single bacteria and virus in the world has the sole purpose of infecting my daughter. Insane? Completely and utterly. But it’s ok once you acknowledge that, right?

Of course the most difficult part of this cough-phobia is when it’s someone in the family that’s hacking. Bad enough if it’s me or the hubby. We’re pretty swift to cover our mouths. But oh my sweet baby Jesus the absolute petrification when poor Danny gets a cough. Danny is four, so can’t possibly grasp the seriousness of the situation. He just knows his sister’s lungs need help to work as well as ours. But I have to hand it to him, he’s pretty damn good for a four-year-old. I’d say he’s had at least six coughs since Eva was born, including croup twice, yet she’s only ever caught one dose off him. My saying ‘cover your mouth’ about 600 times a day is clearly paying off.

But isn’t that sad in itself? That your poor wee man is under the weather and you spend your time nagging him because you’re in a cold sweat about his sister catching it. It really can’t be easy to be the sibling of little person with CF. Of course I’m totally aware of giving Danny bucketloads of TLC and I always err on the side of a doctor’s visit if I just don’t like his form. But  I catch myself at times, harshly snapping ‘cover your mouth’ out of sheer frustration, and then the wave of guilt comes. Before Eva arrived, I’m pretty sure I was a sympathy machine to his every snuff and puff. It’s not that I care less now, I just have to worry in two directions. I can’t wait until he’s old enough to understand all of this so I can tell him he’s a hero for covering his mouth and washing his hands with (mostly!) good humour at such a young age. Eva is lucky to have you Dan. You’re the right person for the protective big brother job, even if you don’t realise it yet.

Both Dan and Eva are coughing today, hence the post – but fingers crossed the fear remains just fear.

Not sure why, but today is the day.

My amazing, brave, salty sweet daughter, Eva, will be 2 next month. Eva was diagnosed with Cystic Fibrosis at just 3 weeks old – a day that struck fear in my heart and a  knife in my stomach. A day that changed me and my family forever.

I’ve started a blog about this little lady a million times in my head, and more. I’ve written hundreds of posts in my brain. And yet I’ve never actually committed my fingers to the keys. This evening I feel tired, weepy and foggy so it’s beyond me why today is the day my fingers are fumbling for an outlet.

I have no reason to think that anyone should have any interest in reading my ramblings. In truth I’m probably writing as a form of self-counselling. A way of dealing with and ordering the constant barrage of thoughts and emotions that bombard my brain on a daily basis.

Cystic Fibrosis is Ireland’s most commonly inherited genetic illness. To be born with it, both of your parents must be carriers. And in Ireland, 1 in 19 of us are. As a carrier, you are essentially symptom free. You need to be unlucky enough to inherit a dodgy gene from both parents to actually have CF.

When you’re a pregnant woman who’s 32 and healthy with no immediate family history of CF, you have no reason to suspect your baby will be born with it. You think you’re playing it safe by having your kids while you’re under 35. You think you deserve to have a healthy baby because you didn’t drink when you were pregnant. You didn’t eat unpasteurised cheese. You didn’t eat more than a tin of tuna a week. You took your folic acid. You took your Vits. You did pregnancy yoga. You waddled down the road a few times a week to get exercise. You did everything by the book. But Mother Nature doesn’t have a book. And you never know when your family is going to get picked on.

I say that like I’m bitter. But in fact there are times I feel like the luckiest mother in the world. I have an appreciation life that cannot be explained. I treasure every single nanosecond that I spend with my daughter, my son and my husband. I have renewed perspective on life – no matter what goes wrong, I can deal with it once Eva is ok. I love every hair on her crazy curly head with an intensity that I never thought possible. If she was only on this earth for 5 minutes, it would be the best 5 minutes of my life.

When Eva was diagnosed we were told that her life expectancy would be in the 30s. I was a few weeks shy of 33 as those words were spoken. It seemed impossible to comprehend at the time and, if I’m honest, it still is. Except that I don’t believe for a single second that it’s true. Treatments for CF are advancing at a phenomenal rate and there is so much hope. I don’t think it was a coincidence that Eva was diagnosed on a day that Kalydeco (a life-changing treatment for people with CF with the G551D gene – Eva doesn’t have this mutation) was all over the news. That was someone trying to reassure me that we’ve got this. We’ll have to fight at times but this family and my daughter intend to put Mother Nature in her place. And every time I look into my sparky lady’s little eyes, I just know she has that fight in her.

Eva baby, we’ll go a long way.