This is an open letter to all medical staff- everywhere.
I have been holding off saying anything, for as long as I could.
Now, now I have no patience left.
If you work in a medical profession, listen to me very carefully.
You. Do. NOT. Understand. My. Life. As. A. Special. Needs. Parent. So do NOT judge me, or think for a moment you have the right to make comment.
Do I need to say it again? Because if I do, I will not hesitate to start throwing around official complaints. Yes. One has already been made, and I will do it again if I have to. And take it further.
Because, when you hear me finally lose my temper at 2am, with my child who has not slept a wink yet, because he is unwell and in a different environment, with many different medical conditions, no you do NOT have a right to say something in the morning and treat me dismissively.
Stop for a minute.
Think about those few minutes you spend coming in and out for OBS and other nursing duties.
Now, imagine that life, not as a nurse on shift. No, not as a mum, who has 3 children under 5, who thinks she understands my exhaustion.
Think about being a mother and a nurse constantly. And no. All the respite in the world, will not make me feel rejuvenated or refreshed.
Why? Because I have learnt not to sleep properly. I have learnt to be on alert 24 hours a day, 7 days a week. No, your understanding of always eating cold food and drinking cold coffee (to a point where you cannot order or tolerate hot coffee anymore), is NOT the same as mine.
If I have finally started to lose my cool, think about how many consecutive nights, or in my world, years, I have suffered from a lack of sleep because of my sweet little child living with brain damage, or because I now have stress and anxiety induce insomnia.
Remember all those times you get tired and annoyed with your own children for whatever normal reason you have, and remember that special needs doesn’t take away the fact that I am human and I too, as well as my son have suffered.
The difference, is I am aware of all the suffering.
I get frustrated with my son, with my family, with you and all the doctors too.
Because I am tired. Mentally and spiritually. Not just physically.
I hear you discussing other ‘dramatic’ parents in the hall, when you think no one knows you’re being another one of those judgemental medical staff, that are putting up road blocks to support for us, and not taking us seriously.
Yes I hear you talking about the mother in bed 37, complaining that the therapist wasn’t trying anything new.
Um. Guys. YOU ARE OUR LINK TO CHANGE. We don’t get a special number to call, we have to go through 1 million different avenues to get our worries seen to, after several different appointments, with several different specialist. Usually to just get blocked and dismissed again anyway.
I don’t see anyone offering me, after all the help I’ve asked for, in the hospital and out, for some sort of child psychologist to help me better understand my child who is non-verbal. I don’t see you living with that pain. Or help with sleep and yes I see a psychologist myself. What more can be done, living this life when specialists don’t take sleep deprivation seriously.
Sure, maybe I was cranky and raised my voice too much. But guess what. That is what EVERY CHILD EXPERIENCES. It’s what teaches them that everyone has a threshold. No showing anger and frustration, by raising my voice saying “No. Enough now. You’re being silly.” Does not make me an abusive person.
Shit, if I was abusive, don’t you think I would of lost my cool the serveral times my child almost died because you were ignoring my pleas??
That is what you, a normal parent would do, with a normal child. Just because my son has special needs doesn’t not make me all of a sudden some magical creature with only the ability to show positivity.
In fact, quite the opposite. I have seen the really messed up side of life, I have seen the side of the medical profession no one seems to want to talk about, or shed light on, to change.
And this happened to ME and MY son. Seeing it all unfold doesn’t, by any means give you a position to judge me or my now shattered state of mind.
I am way beyond my threshold lady. I have what is called carers burn out, I don’t see anyone or you coming to rescue me? I don’t see you coming in to watch my child so he doesn’t aspirate while he has gastro and I run and go grab breakfast at 1pm… I now have to plan my family, who are not in the position to help anymore, to come and sit with Noah because, no I cannot handle the sleeplessness anymore. No I shouldn’t be expected to go without food because you’ve forgotten I asked you several times, to organise a carers meal. Or freeze in winter, with your air cons on because you forgot to order more blankets – when I happened to be seriously sick myself. To which you said to me “you don’t look that sick.” Oh I am sorry, do I have an option to be sick and leave the hospital, while you look after my child that needs constant supervision or could die from aspiration? No. I didn’t think so, so sit your judgy little butt down, back in the nursing hub and keep your snotty comments to yourself and learn what empathy is.
Sure you’re busy. I see you, I see all the stress you carry too. I see the amazing nurses as well, that actually care for Noah as well as me – his primary carer and his seriously stressed-out-to-the-max Mum. (Who needs to be considered and not dismissed in this scenario, considering I have a hell of a job on my hands..)
But you are paid to be here, I am here, scared, stressed, lonely, tired, angry that this is our lives and I can’t cure my child. Angry that this stupid place doesn’t acknowledge that this isn’t my fault. Disgusted that I am treated the way I am because of your ‘educated’ prejudice. Which I might add, is merely enough insurances and government funding ‘to make things go away.’ Which had nothing to do with my parenting.
If it wasn’t for me, Noah wouldn’t of made it. If it wasn’t for my battle WITH YOU, he wouldn’t of survived.
So the next time you want to judge a parent, that’s been handed really fucking shitty cards, go home to your average life and remember my tears when you go to sleep at night. Remember me cradling over my son, countless times wailing in heart break that this fucking happen to not just him, but me too – you know, ‘the insignificant parent that will be caring for my QUADRAPLEGIC SON FOR THE REST OF BOTH OF OUR LIVES…’ while y’all go about your normal person’s business.
I have had enough of people judging special needs parents, even my own family.
Now. When you all walk away because this is too hard and you have you’re own lives – remember ours was changed dramatically and indefinitely.
I am not scared to stand up anymore. I’m really over it. I’ve done this, with such bullying and unprofessional judgement on my back now, for four years.
This is my life and I don’t have a choice. Not because I don’t have the ability to walk away, but because I fucking love my child to the depths of the ocean and more, a love most don’t understand until they are forced to experience unconditional love.
I could dust my hands off and say I’ve had enough, but I don’t have a choice because my heart won’t allow me to, even when my brain is overloaded, because my happiness is here, with him. During those moments that we do have that are wonderful and worth more than any escape.
So the next time you want to give me attitude, don’t expect your rudeness to go unnoticed or ignored. You will be hearing about it again.
Original FaceBook post here.