Today I wanted to write a small piece about holding on to your marbles when you have a child in intensive care but before I do this I just want to say, if you have suffered mental health problems as a result of a NICU stay then please do not be offended. Marbles are notoriously difficult to hold on to in situations such as these and its probably fair to say I saw a few of my own roll down the corridors throughout my three month NICU journey.
Now in previous posts I have praised the amazing work of the staff on the intensive care unit, not just for the delivery of life saving interventions but for helping me through the really difficult times. Well that post was written on a good day..
In this post I want to explore the pressure of the intensive care environment and what happens when it all gets too much and the care starts to impact in a negative way.
let me explain..
When Smidge came into this world born at 25 weeks gestation I knew it was an odds game.The odds of survival, the odds of a brain bleed, the odds of long term problems. Life felt like a marish cross between holby city and a game of dodge ball.
At the time,although the situation was notably hideous,it was hard to see the effect it was having on me and how I was coping as a result.
In the initial stages, making my way to the intensive care unit was an utterly terrifying experience. Every time a doctor walked in my direction I would think they were coming to take me in to a side room and give me some terrible news. I mean seriously, I must have looked like a wild rabbit on acid.
Still to this day I am baffled about my then sense of rational. Was it paranoid to be thinking as I did or was it entirely appropriate? Thoughts such as these would then give rise to other questions like 'Am I coping ok?' or furthermore 'does everyone else think I'm coping okay?'
And this is the thing with mental health I feel. Someone has to draw a line somewhere around what is considered 'healthy.' But where that line is drawn in different areas of health care is a very interesting thing.
The prolonged uncertainty and fear that comes with having a baby born at 25 weeks is inevitably mentally challenging, but to what extent that fear spills over and impacts on to other thought processes is a very curious thing.
I was often deemed 'anxious' for asking lots of questions and that used to really rattle me. As a social care professional I prefer to be the one making defining statements and it was seriously painful being the subject of others' observations.
You see I have never been a watch and wait sort of person. I deplore guessing games, loathe brain teasers and throw a paddy if I cant find my car keys and when I was in the NICU I wanted answers regarding the health and treatment of my child. What I did not want is value judgements on how it was felt I was coping.
Below I have listed some of prize winning comments I received from some of the less conscientious medical professionals, which, to be fair to the vast majority, were far and few between.
1. "At least we can have a laugh with you now, it's taken a while" (oh sorry,did I leave my joke book in theatre?)
2. "Well you are one of our more anxious Mums" (Can I have a rosette for that please?)
3. " You're looking a lot better today than you did yesterday" (Thanks..I think..)
4. "At some point you are going to have to start enjoying your baby" (And when would you most like to see that..before or after she turns blue again?)
I guess what I'm trying to say, in a rambling ranty sort of way is this:
Its a bloody awful situation when you're own child is fighting for its life.
It's unbearable that no-one can promise you the outcome you so desperately hope for.
It's miserable that it goes on for weeks and weeks and weeks.
But sensitivity costs nothing..
So don't tell me how I look or how it is that I should behave.
Don't speculate about how I feel or compare me to others.
And if you must judge me, then may you do so quietly or upon invitation because it might just be another day at work for you but for me, just waking up and walking down that corridor everyday was an achievement.
For me, It was the difference between holding on to my marbles or loosing them.