Relentlessness: a good word for describing something that’s harsh, unforgiving, and persistent, like the hot sun in the desert, or a cold that keeps you in bed for days with a nose like a strawberry. When you’re relentless about something, you mean business.
Being a mum to poorly children, as I’ve said many time before, is not easy. It comes with a whole heap of extra anxiety and guilt and is an endless cycle of hospital visits, frantic emergency appointments as well as cancelling of plans and much needed escapes.
I’m that mum. The mum who doesn’t want to always dominate coffee mornings or evenings out with the talk of the responsibility and stress I face every day. The mum who quietly gets on with physiotherapy, organises hospital appointments, dishes out medicines like sweets, calms fears, soothes pains, and rarely asks for help. I know many parents all do this, but it is relentless when you have children with genetic illnesses. The fear doesn’t ever go away. Not when you are living with a life changing and life limiting diagnosis.
And in my case it isn’t for one child, but two. Double the responsibility. Double the anxiety. Double the fear.
And as the mum it is hard. I have a firm grasp of their diagnosis and treatment and so when people talk to me about my boys I’m often seen as the expert, the doctor, not the mum who has sick children. I don’t want to talk about them in terms of statistics or medical data. I don’t want to be told I’m being a great physiotherapist/nurse and meeting their needs. I want to be held close and allowed to freak the fuck out because I’m bloody terrified.
For four years I faced doctors on a regular basis, my instincts telling me that my middle child was desperately poorly, only to be told he had a dairy allergy, asthma, reflux. I had medicines thrown at me and at one point her was on a cocktail of seven different meds daily. None of it helped and whilst he was wasting away and vomiting thick yellowy-grey phlegm several times a day whilst coughing his guts up all night his right lung was slowly dying. And by the time I was properly listened to it was too late. And it could not be saved.
And that hangs over me constantly. That fear that somewhere in their tiny, fragile bodies, irreversible damage is being done.
I watch other mums at the school gates, worried about their child’s spelling test or whether or not they’ve been put up a reading level and I wish I was one of them. Because I stand there and worry about whether his temperature will spike during the day. Whether his medicines are working. Whether I’ve made him do enough physiotherapy to clear the mucus from his lungs. Whether anyone on the class has been sent to school ‘calpolled up’ full of a nasty bug that could destroy his remaining lung. Whether he is looking skinnier than his classmates and what I can feed him to bulk him out and give him strength more. Whether he’ll be able to keep up when they play in the playground at lunchtime. Whether my phone will go during the day to tell me he is unwell or has been sick. Whether he is happy and enjoying his childhood enough in spite of all the crap he has to face.
When someone says their child is poorly I feel unreasonable anger that their child probably just has a cold and will be ok with some love and a day or two off school. And then I feel guilty for being such a bitch. Because I don’t have the monopoly on sick children.
Being that mum, the one with the sick children is hard. Trying to be normal and accept it is hard. Trying not to wish that it wasn’t your children is hard.
Trying not to scream everyday that is so shittingly unfair is hard.
Maybe a return to blogging every now and again, to purge my brain of all this crap, may just very well be the answer…
Preparation: The action or process of preparing or being prepared for use or consideration.
How do you prepare for something you are dreading and that affects the whole family and a wide circle of friends? It is not easy, but it is necessary, for when the event happens, whatever that event may be, preparation is always the key to it going more smoothly. Yes, there may be bumps and bruises and unexpected hideousness along the way, things that are out of your control, but preparing as best you can for all eventualities, in my opinion, can only be a good thing.
Next week my six year old son is going to have a lobectomy and this week I am trying hard to prepare for that, both practically and emotionally, and I thought that if I wrote a blog post about my top tips for preparing for a young one be in hospital, it might help me, as well as maybe someone else.
It’s a scary thought, whatever the operation, and having spent a lot of time with my son in hospital recently, watching him have two general anaesthetics in as many weeks, I am more aware of what is to come this time.
So here are my tips:
Avoid Google – Oh this one is so important. How many times have we all Googled something and wish we hadn’t? Because it always ends up with the worse case scenario EVER!! My advice is to speak to people who’ve been there and done it. I was ever grateful for a close friend who took me aside before my son’s first general anaesthetic and told me that children fight it. That they don’t often fall straight to sleep in a fuzzy, relaxed state. And she was right, he did fight it and it was upsetting, but it wasn’t shocking because I knew it was coming. I have since spoken to friends of friends whose children have had parts of their lungs removed (everyone knows someone right?!) and their stories have been heartening tales of a vile few weeks, but a worthwhile outcome. (The operation is a bit like looking at labour when you’re pregnant for the first time, you forget that you’re going to have a baby/recovery time afterwards and that in itself can be harder than the op.)
Don’t Google, ask the doctors and the surgeon and find people. Ask all the questions you have.
Clothing – For both you and the patient! Hospitals are hot and uncomfortable places and the comfier and looser your clothing the better! They do not need to be designer or expensive, you’ll probably throw them away when you come out or save them for doing the decorating, but they really do need to be comfortable!
Parking – Parking in hospitals is pretty hit and miss. A few now allow you to pay by credit card, and some even let you pay as you are leaving so you don’t have to rush out mid appointment to pop more change in. Either way the trick is to do your research. There is often a cheaper public car park nearby. Keep some change in the car and if possible park in a car park that lets you pay on the way out.
Distraction techniques – Yes, you will need to be strong and find ways of distracting yourself during the operation. Personally I write, be it a blog post, a diary entry that no one will ever read, or my novel. It is hard to focus and I know half of what I write is rubbish, but that’s not the point, in writing I am stopping myself from catastrophising, which is good for no one. Watch Netflix, read a magazine or a book, get an adult colouring in book and treat yourself to some fab felt-tips, crochet, or do your tax return, it doesn’t matter what you choose, but you must make sure whatever you choose is at your disposal. Pack a bag in advance with these things in. Mine is in the study all ready.
Food and nourishment, for you – In that bag of distractions you need something to keep you going. Having a child in theatre is a sure fire way for your body to use up all of its reserves and you are no good to anyone if you are fainting in the waiting room. I pack flapjacks, slow release energy foods and water to keep hydrated.
Necessities – if you are staying in overnight with your child then there are some things you absolutely have to have. Earphones!! They don’t cancel out every noise, but they help and at least make you feel like you are shutting off the outside world for a bit. Face wipes. I know beauticians are now going ‘ah no they are the work of the skin drying devil’ but needs must. They work to clean not just your face as well. Dry shampoo. I did not want to leave my son for a second so showers were rare, dry shampoo saved me on many a day. And when I did have a shower I made sure I used my poshest shower gel and pampered myself! And finally, if like me you have a lovely friend who gives you her Netflix password, and another equally nice friend who allows you to borrow her husband’s noise cancelling headphones, then I suggest you get yourself some of these as well!
Buy a notebook – I have a notebook that I keep with me at all times. And every time a doctor speaks to me or anytime I think of a question in it goes. It is invaluable because your brain will not be in a state to retain certain bits of information, or you may only focus on the worse things you are told, if it is all written down in black and white it can be reassuring and help you make sense of everything is going on.
Friends and family – This goes without saying. You need your best friends on speed dial. People who don’t care if you phone them at 3am and do nothing but sob. People who bring you endless cups of tea and bars of chocolate. And remember they need your support too. I am very fortunate to have the most wonderful family and friends. People who know that, when I say they are suffocating me, to take a step back. And others who, when I isolate myself from them, know how to take a step forward. I’m learning that no matter how people try and help, I need to accept their help, even if it seems misguided at the time. Communicating with everyone s vital. People want to know what is going on. And that includes my other children. The three year old knows his brother is poorly and has to go to the hospital and that he will be looked after by his amazing Nana for a while. And then there’s my fourteen year old. Does she know that the surgeon may have to stop the operation to prevent her brother from bleeding to death? No, but she does know it’s very serious and that for a short while my focus will be elsewhere. And that I love her as much as I always have, even if I am not able to show it right then and there.
There’s not a lot that can make the harsh reality of risky surgery on your child any better, and for all my preparation I know will still be that mum in tears at the hospital next Thursday afternoon. But I also know that I’m ready, we’re all ready, and will have done everything in our power to prepare to support each other through it.