Dealing with the fact your child has a chronic illness.

It's quite ironic that I'm writing this post on how to deal with an issue that I'm not even sure how to deal with yet! I guess I'm just trying to explain how, as a new CF mum I get by each day. I think Ian will agree with me when I say we cope quite similarly. We use the same kind of coping strategy to help us deal with the fact that our little Oli has a disease with the ability to dramatically decrease his overall quality of life or even shorten it. Our go to coping strategy is denial. Haha! Not what you were expecting? Well to be honest maybe it isn't denial. All I know is that I don't like to think about it. I just don't let my mind wander into the abyss of negative thoughts about Oli being really sick, or that he won't be able to do things other kids his age are doing or that he will experience pain & suffering, or that maybe we will outlive him. 

That last possibility gives me goosebumps. Why would I dwell on the negatives when I have a sweet, healthy baby of ten months who fills my days with so much joy?! Before having Oli I prided myself on being such a positive, laid back person. This attitude has been very much challenged since his arrival but I try hard not to let my mind wander into the what if's of CF. I also avoid things that I know will upset me. For example googling! If you want to feel depressed go and google illnesses. I did this once when I was pregnant and terms such as 'drowning in your own mucus' and cf being a 'lethal disease' left me bawling. I won't look at pictures of lots of medical things or people that look really unwell. I don't know their stories and how they got to where they are. I don't feel that would help me to be the best mum I can be for Oli. 

I recently learnt the hard way that perhaps not everyone shares my positive outlook for Oli's life. I was in in a social situation where I was forced to talk & think about Oli being extremely unwell and close to the end of his life. The person I was talking with obviously had limited knowledge of CF in children and clearly no idea of the pain and suffering we had been through as as a family to get to the point we are now. I find it baffling that someone could speak about another child's health so flippantly but I feel I've learnt a lot from the situation. As horrible as it was and regardless of all the tears I shed afterwards I realised that not everyone is on your side in life. There are people who look at the world in a negative light and speak without thinking about the effects it could have of another person. I guess dealing with people asking questions that make me uncomfortable is something I need to get use to. Or I need to work on my comebacks, I'm certainly not as witty and fiery as my sisters! 

Unless we have to we don't tell people oli has CF. It instantly labels him and the conversation is just too long or depressing like I previously mentioned. Oli is a normal baby,  he had a rough start but looking at him you wouldn't have any idea he has a chronic illness. Ian and I both share the belief that we will raise Ol exactly the same as if he didn't have cf. Of course taking into account his extra needs! But the point I'm making is that he crawls in the grass, he will play just like his friends, he won't be wrapped in cotton wool. I have seen both personally and professionally how slippery the slope of overprotecting kids can be. I don't want to stop Oli from doing so much that he ends up left out and with no friends. He is just a regular little boy, who knows no different to his daily routine of medications and physio. Instead of focusing on the what if's and the negative parts of CF I try to focus on the positives. 

Having a baby with with a chronic illness has made me...

  • Appreciate my health and those of my family members, including Oli! Every single day we get through and Oli is well I'm so incredibly grateful.  
  • Realise life is short and not to sweat the small stuff! It really puts life in perspective. My house is a mess, oh well! At least we are all here enjoying the filth! 
  • A better wife! Our marriage is solid! Our relationship has been pushed and stretched and strained but it's the strongest it's ever been. We truly are best friends and I'm not ashamed to admit that we regularly refer to ourselves as 'the A team' Hehe nerds I know. The trauma & pain we have been through has made us appreciate and love each other a billion times more! No one will ever understand what I went through in the early days with Oli, except Ian who was holding my hand every day and wiping my millions of tears every night. He's just the best.
  • Realise people are kind. I have met so many wonderful people and discovered just how generous people can be. I couldn't get through without my support networks including our families, close friends & my angel who comes to visit a few times a week from CFWA.
  • A better nurse! I like to think that I was a pretty good nurse before Oli came along but my goodness there have been so many lessons I've learnt from being on the other side. Like being in the NICU and being hassled about where I put my bag and feet as I sat by Oli's cot post op...or my favourite rationale 'because thats the way we always do it'  Back in the day I use to be so happy when parents weren't there with their kids! I could just get on with my work! So funny to think a few years down the track and there would have to be some kind of natural disaster to get me away from Oli's side! The experiences I've had now can only make me a better nurse and midwife. 
  • Just breathe. While I can write about just how much I try not to think about oli being unwell, always in the back of my mind hides the thought of him becoming terribly sick. Even when he pushes my buttons, even after my fifth time getting up in the night or when he scratches my face off at 6 in the morning. I just remind myself, he is just so precious and his fiery little personality is exactly what shows me he is fighting fit and A okay! 

Any parent will agree with me that seeing your child unwell is devastating. Mostly everything we do with our kids is within our control, when they are babies at least! When it comes to their health we would do anything to stop their pain and suffering. I feel like Oli's health is out of my control. On a day to day basis I just thank my lucky stars that he is healthy and try everything I can to stay on top of his treatments. This is how I deal with having a child with a chronic illness on a good day. On a bad day I cry, feel sorry for myself and say why the fuck has this happened to us?! But the good far outweigh the bad and like always the A team just keeps plodding along!