Collapse: verb (used without object) to fall or cave in: crumble suddenly: to sink into extreme weakness: (of lungs) to come into an airless state.
There’s a lot of time to think when you are in hospital for two weeks. Seconds, minutes and hours to get lost in your own imagination…or frustrations…or neuroses.
You see things differently when you have a child who is unwell, at least I have. I don’t care about my weight, or money, or housework, or the little things. So what if someone is rude to me for no reason – it’s their problem and a reflection of how their day is going not mine. Who cares if I’m a bit late, or forget to reply to a text message the same day – true friends understand.
These two weeks have taught me many things.
I already knew that I am very much a person who is both a people pleaser – desperate to be liked – and someone who can be quite intolerant of people. In many respects the latter has intensified during our time in here. Some people really do stress about the most ridiculous of things – which I guess are relevant to them, but still. And yes, that may sound harsh, but I…don’t…care.
I’ve learnt how amazing nurses, physios, doctors and anaesthetists are. They are seriously awesome. They work so bloody hard and go above and beyond the call of duty on a daily basis. There are so many things that happen in children’s hospitals that have blown me away. Right now, my 5yo is sat with Wilf, a bubbly storyteller who is reading him a monster book that he is allowed to keep thanks to a wonderful charity called Readwell. My son isn’t usually a talker, but has opened up and is chatting like he’s known Wilf for years. The people who work here know children, and know how to make them feel safe and important. And of course they are wonderful at supporting us parents too.
I’ve also learnt about the never-ending resilience of lovely little people. They simply go with how they are feeling at that moment in time and never, ever wallow in self-pity. They get on with it, day after day. No matter what is taken out of them, or injected into them. They may complain at the time, but when it’s done it’s as though it didn’t happen in the first place and their smiles are soon back in place. (Disclaimer: bribery and corruption may, of course, help to inject them with a bit of bravery!)
And of course, although my son is seriously poorly with a collapsed lung that is proving to be very stubborn and reluctant to inflate, and although he is puzzling the doctors as to why this has happened, even though he has a list as long as my arm of other symptoms, he is in himself doing a very good job of appearing to be a perfectly healthy young boy. There are many reasons why a child may be unwell, and varying degrees of how this affects them, I am talking here about my experience with my son.
I knew sleep would be rare, but I’ve learnt that I can survive on less slumber than I thought. I’ve had a hunger that has in no way been satisfied, but have learnt to listen to my body and eat whatever I’ve craved – my figure will still be there under the blubber and waiting to return when I stop stuffing my face through comfort eating.
I didn’t know I could spend so long in one room (my son has been in isolation) and have dealt with my anxieties and stresses in ways I hadn’t considered before. (You all need Omvana in your life!)
I’ve learnt that one of the most painful sounds is that of a sick, young baby crying.
I’ve learnt that noise cancelling earphones and Netflix have been the best way to spend the evenings and distract me from the many noises a hospital emits.
The generosity and love from others has been overwhelming. I don’t like being pitied, and have never been good at asking for help, but I have learnt that everyone wants to help and even if you don’t let them, they often do so anyway. I’ve also learnt that everyone helps in their own individual way – ways as individual as the people offering the help are themselves – and to gratefully accept it all.
I still need to learn to lock myself away from the outside world a little less, but must admit I have found it hard repeating my son’s current condition over and over again to so many different people. I love that they care and I am so humbled by the amount of people whoare thinking about him and need to know how he is, but at times it’s been too hard to talk to them all. What do people expect me to say when they ask how I am? How the hell do they think I am? I’m drained. I’m broken. I’m in a constant sleep deprived, anxiety ridden state. We’ve been here for two weeks. Two intense weeks of general anaesthetics, bronchoscopies, ciliary brushings, blood tests, X-rays, mucus tests, biopsies, physio, antibiotics, nebulisers, tubes up noses and into stomachs and more. There have been no diagnoses, only things we now know it’s not, and the lung is still partially collapsed. Harsh as it sounds it’s been easier to ignore people who ask me how I am than to tell them the truth and for that I am sorry. I’ve cried, I’ve had panic attacks, I’ve shouted, but I’ve done it. And I couldn’t have done it without every single one of those people who care having been behind me all the way.
I’ve learnt how my son is so very much loved. The ‘get well soon’ cards and gifts from his friends have filled his hospital room, meaning he has never been short of things to do. Visits and video messages have put that infectious grin back on his face and given him renewed energy and strength.
I’ve learnt how mature a thirteen year old can be. My daughter has been such an amazing support and has quietly got on and organised herself whilst we’ve been to and fro from the hospital. My two year old has also surprised with me with how aware he is that something isn’t right. He’s needed a lot more cuddles during the last couple of weeks when I have seen him. Mind you, so have I. I miss being at home as a complete family.
I knew my mum was wonderful and amazing and supportive and she has done nothing but cement that knowledge. She is the best.
I knew how bloody brilliant my husband was. He’s stepped in during the night shifts when it all got too much for me and I needed to go home. He’s listened to me rant. He’s wiped away my tears. And he’s not complained (much!) and was always there when we needed him. He has been such a support whilst also dealing with his own emotions. Not to mention the fact that he had to cancel his yearly snowboarding holiday. That did not go down well!
I’ve learnt that some illnesses are hard to diagnose and even though you want your children to be fixed, it’s not always straightforward. Trusting doctors can take a lot of effort at times, amazing though they usually are.
I’ve learnt that I can cope with more than I realised.
And finally…I knew that my five year-old son was awesome…but he has blown me away these last two weeks.
Fingers crossed we get some answers soon – I’m still learning to be patient.