I debated writing this blog for a while. It is almost impossible to explain the effect on a parent of a long term stay in hospital with a poorly child. I appreciate that everyone would cope differently, even my husband and I both have very different strategies, but I haven’t met one parent that hasn’t fallen completely apart at somepoint.
I don’t think it matters if you know you’re going to be in for weeks or if its a dreadful unwanted surprise – this is the second time I’ve done a long stay and i pretty much followed the same mental pattern.
Week 1 – I can cope, I am organised, I will eat properly and sleep properly
It’s actually a pretty easy week, you’ve had a decent amount of sleep and food the week before, you’ve had recent access to daylight and you’re feeling pretty positive about telling the doctors and nurses what’s wrong, what medicines, what feeds etc.. because no one can look after your baby better than you. You got this.
You organise a sleeping schedule with your other half, cook, do the crossword in the newspaper, communicate and socialise with other parents… pretty much act like a normal human being – just accepting the fact this week is lost forever.
Week 2 – Starting to doubt yourself, missing the odd meal, starting to get really frustrated at the constant beeping and interruptions to sleep
Ignoring the medical side of whatever is wrong with your child, because by week 2 – they’re officially really sick, you join the ranks of the parents who can be seen quickly nipping to the parents room barefoot or in a dressing gown. Gone is the need to put on shoes, socks are optional.
Time, now, does not matter. The only noticeable effect of the passage of time is the fact at 7.30 am/pm you are introduced to a new nurse at handover.
Sleep is proving impossible. You are exhausted – but not so exhausted as to pass out regardless. It is the stage where every beep, alarm, other child’s cry, nurses ‘too loud’ conversation (which is often barely above a whisper) makes you want to strangle someone. Me? I also start getting cross and frustrated with the doctors for not fixing Dominic fast enough and I start getting madly frustrated and stressed out about everything.
The crying starts.
Week 3 – Armageddon, epic end-of-the-world MELTDOWN
Food? What is food?
Sleep? I can’t sleep my life is over! I can’t cope with this anymore! What more do you want from me?!
Crying. Lots of tears and feeling sorry for myself. Lots of tears and feeling guilty about feeling sorry for myself when Dominic is fighting for his life. Lots of tears and getting angry and frustrated and wanting to smash stupid bleeping monitors into tiny tiny pieces just for 5 minutes peace. Few more tears. Tell doctors where they can stick their ‘watch and wait’ advice. Ring everyone I know and cry down the phone at them too.
This is the point where I ask for help – from everyone.
This time, I spoke to the parent psychologist, the chaplain, the Ronald MacDonald House staff, the nurse… and even an emergency GP appointment for some sleeping pills. This is on top of every family member in my contact list.
The point is – if you ask for it, the help is available. I hadn’t slept or eaten in 3 days because of the horrendous withdrawal Dominic was going through and the lack of sleep had completely wrecked my view on reality. I couldn’t see how I could cope any longer. No reserves left. At all.
Honestly, EVERY parent gets here. It’s just the ‘when’ that varies. That absolute bottom where you just don’t believe you can take it anymore – with the added guilt of the fact it’s not even you who’s actually sick. You should be strong for your child – they’re the one going through this!
But you are going through it too. And you are less use than a chocolate teapot if you’re falling apart, physically and mentally exhausted. Look after yourself to look after your child.
The nurses and Drs have seen and heard it all before. They will help – and without judging you about it.
Just… don’t attempt to murder the next person to say ‘are you eating?’ Or ‘are you sleeping?’ … that is not going to help your situation.
Week 4 – Tenative Grip On Reality Again
It is true what they say, you have to get to the bottom to climb back up again – and when you climb back up, you’re always in a better place.
For me, usually that is just the point where I give up berating myself for what I can’t do anything about and how useless I feel, and start simply taking each day one at a time again.
Remember to eat. Remember to sleep – even if that involves leaving Dominic with the nurses for the night. Go for a walk OUTSIDE in DAYLIGHT. Start doing the crossword in the paper again.
By week 4, you have no idea what day it is – it is really bizarre. Time has stopped. Someone mentions that you’re actually now in the next calendar month and this is a complete shock.
The hospital is now as much home as home is. Wandering around the entire hospital in socks and pyjamas is completely normal and the nurses are no longer militant about the no hot tea on the ward thing (providing you are discreet about it). You are now likely to be one of the few ‘veteran’ parents left and it is your responsibility to give the box of tissues to the next parents and sit and listen to them and their stories. And then give them the only advice they will hate you for immediately and love you for later:
Yes, you will be racked with guilt, you will cry the entire way back, you will feel like the worst parent that ever there was a parent.
But then you will go to sleep.
And then you will wake up and feel like a human again.
And it will all seem more manageable.
You might even brush your hair before you go out in search of food 😊