To my child with the imperfect genes; you are perfection

To my darling baby girl,

On the day you were born, it wasn’t just my world that changed forever. I changed forever. My heart, my mind, my being; they are all unrecognisable since. You have touched, enriched and changed every single thing about me as a person.

When I went into labour, all I was concerned about was having a VBAC. Looking back I reflect on how naïve I was; I knew nothing of what was coming. I knew nothing of the massive journey we were about to embark on together.

When my waters broke they were green – how panicked would I have been if I had known then that you had Cystic Fibrosis. The idea of you inhaling meconium into your vulnerable little lungs would have sent me into a total tailspin. But despite the meconium, your heart rate stayed steady – you were cool as a breeze. And four years later, you still are.

I had to be sectioned in the end, but once again, you took the procedure in your stride. Me on the other hand? I had a haemorrhage and lay shaking uncontrollably on the operating theatre. My body was in shock and I remember the unsettling feeling of not being able to control the movement of my limbs. They went to put you on my chest and I was terrified because I couldn’t calm my body down. I didn’t want you to fall. I wanted to protect you. But when they placed you on my chest, my body instantly became still. It was like you had some magical, spiritual quality. You soothed my entire being. And you still do. Every single day. I don’t know how you do it, but you do. As your mother, I feel it should be my job to settle you, yet it is you who settles me.

As soon as they lifted you, I began quaking again.

You were born with a tough set of genetics; a health challenge that is daunting to say the least. But you were also born tough. I’ve never met a little girl with so much courage or personality. With your crazy curls and the positivity that oozes out of your pores, you light up every single room you enter.

You move like a dancer. Negotiate like a chancer. Hug like a bear. You speak with words beyond your years. You somehow always know what to say to lighten the mood. You empathise and notice people’s moods in a way I never thought possible for a person who has only been here four short years. No matter what is going wrong, it is impossible not to smile in your presence. While I live with fear in my heart as we fight CF together, I also live with an abundance of love, laughter and hope.

I may be more anxious than I have ever been in my life, but I am also more happy than I have ever been. Because you, my little lady, are infectious. Your giggle, your personality, your attitude – you are truly magnetic.

I know parents are supposed to remind themselves that their children are their children, not their friends. But I don’t care what the books say. You are my very best friend on this planet. Everything in my life is better in your presence. I love everything about you and I always will.

You may have been dealt an imperfect set of genes, but don’t let that hold you back. Always remember that you are powerful, you are precious, YOU ARE PERFECTION.

To the good people in our bad healthcare system

Like others, I find myself regularly ranting about our healthcare system. And with bloody good reason. It’s slow. It’s dilapidated. It’s out-dated. It’s broken. Some of the stories you hear are not only embarrassing, but downright terrifying. The system is meant to protect us, yet we often feel at our most exposed going into a medical environment – the fear of going in with one thing and leaving with an extra three for free is a very real phenomenon.

I spend a good chunk of time in and out of hospitals and clinics with my daughter who has Cystic Fibrosis, so I’ve seen samples of the best and worst bits of the system. I’ve been abhorred at water-stained ceilings, dirty bedrails and having to carry breathing equipment up and down stairs when my daughter was moving ward for the FIFTH time during a 12-day admission. Acceptable it is not.

But I’ve also experienced much kindness and thoughtfulness from staff who are doing their best to compensate for the shitty excuse of a healthcare system they find themselves working in.

So I just wanted to take a minute to acknowledge that this bad system is also filled with some really good people. People whose kindness will stick in your mind long after the trauma is over. People who can make the most horrific experiences even 1% easier to deal with. And that 1% may just be what gets you through it.

I’ve had a couple of standout moments of kindness over the last few years – they stay in my mind, yet when I discuss healthcare, they’re not what’s on the tip of my tongue. I’ve often thought about sharing them, but have never done it. So here goes – here’s a sample of my gratitude list:

  • To the CF nurse who gave me her mobile number when my daughter was first diagnosed – I will never forget that you were prepared to let me call you at any time as I struggled through the most difficult weeks of my life. I think I only called twice (I’m sure I thought about calling twice a day!), but knowing that you were there gave me such huge peace of mind. It’s a gesture I’ll never forget.
  • To the male* nurse in A&E who found us an isolation area when my daughter was only tiny and had to come in for review. You knew me and my husband were on the edge and you hid us in a room away from everyone else. I don’t remember much about that evening but I remember you bringing in cups of water and juice for us even though you were rushed off your feet (I’m pretty sure we looked like we needed something stiffer). While I can’t bring to mind exactly what you said, your kind face and voice will stick in my head forever. I still always recognise you if you’re on duty when we have to go in. I’m sure you’ve long forgotten us in the sea of panicked faces you see daily, but your face and manner are etched in my mind forever.
  • To the ward nurse who brought me a cup of tea after a terrifying day with my daughter during her first admission. Her oxygen sats kept dropping, she needed a nasal gastro feeding tube inserted, there was a failed attempt to insert a picc line and therefore blood everywhere. Quite honestly, I was just as traumatised as she was by the end of it and I was crumbling into a million pieces. You’re not allowed hot drinks on the ward but when my daughter was finally asleep, you brought me a glorious cuppa. I hadn’t left the room in days (and you knew I wouldn’t leave to go to the canteen even though you had offered to sit with my girl) and this small gesture meant everything in that moment.
  • To the out-of-hours doctor’s receptionist who let me wait in the car with my daughter when she needed a weekend review – your willingness to call me when we were next, instead of having us sit amongst the germs in the waiting room, massively eased my anxiety. Not everyone appreciates the danger zone that is the waiting room.
  • To our own clinical nurses – some weeks I speak to you more than my own family! I know it’s your ‘job’, but kindness isn’t something that can be learned and your natural empathy and willingness to answer my two thousand questions** never goes unnoticed or unappreciated.

These may read as very small things, but emotionally, the small things are often the big things. And while we need to 100% keep shouting for better healthcare, we should also make sure that we don’t channel our frustration at those who are trying their best within the current system. So my mantra is to always be kind – always say thank you to those who are thoughtful and helpful to you and your children. Yes, you’re going through shit, but they’re probably taking shit from all angles and are trying to put a brave face on it. We’re great at giving negative feedback, but let’s give the positive feedback too. (I know not everyone deserves it, but it’s worth noticing those who do.) Kindness works in both directions and who knows, your positivity may just be the 1% that gets that person through a difficult shift.


*I know I shouldn’t draw attention to gender, but if I don’t your brain will probably picture a woman in this scenario? This may be wrong but it’s totally true!

**On a good day

Image from Pixabay