Power and control
Today is another waiting day.  No news or diagnosis.
Power and control. Â Two things humans really value.
I think that perhaps people take for granted how much power and control they have over there lives until it is taken away. Â I know I did. Â It is particularly felt after having a baby and suddenly your world is dictated by another tiny human with lots of needs.
Power and control is something I have very little of in hospital. Â It is quite dehumanising. Â I wonder how Aria feels and I wonder how adult patients feel.
There is no control over who comes into your room day and night.  No control of your own sleep.  No control over who is in your room first thing in the  morning.  No control over what you eat to some degree.  No control who you talk to or who you are forced to talk too.
Currently I am sitting in a baking hospital room, heat coming out of the furnace and the fan going. Â Perhaps I don’t even have control over the temperature of my own body. Â Turns out the heater is broken and we are hopefully moving rooms.
There are manners and ways of doing things that have been dictated to you since you were a child. Â Speak when spoken too. Â Be polite. Â Use your manners. Â Don’t be rude.
But what happens when you are riding the lift for the 8th time in that day and you really really don’t feel like chatting to a stranger about how fast it is going or the fact your are perfectly capable of pushing your own button to choose the floor thanks very much.
What happens when Aria’s pump beeps off for the 3rd time in the night? Â You are woken for the 3rd time in the night. Â You are puzzled by the fact that the nurse seems to be able to remember to hang the med yet doesn’t not seem to be able to remember to come and turn it off before a tired hospital mum is forced to get out of bed, buzz and yell at the wall for the 3rd time that night. Â Puzzled isn’t the word. Â Annoyed is the word.
What happens at rounds when there feels like 100 eyes staring at you when you are getting bad news? Â What do you do? Â Say to the 50 people in the room, please leave? Â Say to the person talking what you just said broke my heart and the way you said it hurt me?
What happens when you are talking to someone in high heels and immaculate makeup and a white coat? Â Or a person freshly shaved in a tie and white coat? Â What happens when you are in flip flops and shorts and a tshirt with the words Tumeke Bro written on it? Â Even by simple nature of dress it is clear who has the power and who doesn’t.
The strange thing is I live in a community. Â A community were there is relationship but not friendship. Â These people are professionals. Â Perhaps we would actually be friends outside of the hospital. Â But we don’t live outside the hospital we live here.
I am not alone.  I have at least two beautiful friends walking the same hospital journey.  I am not alone.  There are millions of people stripped of their power and control.  Some in this very country thru injustice.  Some in other countries thru war or famine or human evil or earthquakes.  Some in NZ.  I am not alone and more privileged than many on this list due to the fact of a roof over my head and food in my belly.
How does this make me feel about God?  I think thru the nature of my upbringing and culture I find it hard to see God as a loving safe haven who carries me in His arms.  I see Him more as a punisher, life lesson teacher and a being who withholds good things from me.  This is an unbalanced view of God and so not true of what I read in the bible.  My cousins Kathleen and Anita have really helped change this view of God for me.  To quote them “Pull the cosy blanket of God’s peace over you, and relax’  Think I might just do that.  Except today given the temp in this room I will imagine God’s peace as a crisp refreshing breeze blowing my anxious fears away.
26 Responses to “Power and control”
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# 6 Apr at 12:50 pm
What a hard place you are in-not just today but every day that your little girl is on this journey-it just doesn’t seem fair at all does it-why has God chosen YOU and your family to go through all this? You just have to hang on in faith and believe that there is a reason for all this-we choose to either hang onto God’s word or chuck it all away-easy for me to say sitting here! I know you will hang on in there as you always have, even through your darkest valleys and I know too that He will never forsake you-I hope that ‘cosy blanket of God’s peace’ wraps you up and comforts you – God bless you all-love, jeannie
# 6 Apr at 1:09 pm
Right from your heart completely Anita and what heart. You must been so demoralised when as you say, the well-dressed and well-shaven “people” com into the room and give you bad news in a matter of fact way. A kind word, look or words work miracles and manners make life much easier. Thank you for writing in this way as you needed to and we needed to hear it.
God’s blanket is a great idea and sometimes it will need refreshing as we wash our children’s “blankies” but it always be efreshed and keep you safe.
Love to you all. There was an item about Aria in my local paper The Manawatu Standard in Palmerston North, last night and it said about probable confirmation of cancer – has it been confirmed?
# 6 Apr at 1:28 pm
The LORD your God is in your midst, a mighty one who will save;
he will rejoice over you with gladness;
he will quiet you by his love;
he will exult over you with loud singing.
-Zephaniah 3:17
LORD, thank you that YOU are in our midst. Praying you would rejoice over, quiet, and sing over Aria and her precious family. You alone are mighty to save.
Love you guys.
# 6 Apr at 1:30 pm
Anita – you are so honest and we all value that. I’m convinced God does too. Such a difiicult time for you all. Loads of love, hugs and prayers from kiwiland xxx
# 6 Apr at 1:50 pm
I can’t imagine being in your place. I wish hospitals could be more understanding, with more caring doctors who talk one on one with you, instead of making you feel dehumanized. Praying that God will continue to comfort you, hold you, and love you! God Bless your entire family!
# 6 Apr at 2:02 pm
Do you ever get time to read in your always busy and yet often boring life? Get hold of this book that will change forever the stereo-type image we have of God, (the unbalanced view you mention). To start with it is a novel and wouldn’t be found in the non-fiction theology section. Hmmm. That has aroused your curiosity! In the past three years I have read it more than five times and every time God speaks to me and shakes me out of the religious box. Go for it! Oh, by the way the title is “The Shack” and the author is William Paul Young.
# 6 Apr at 2:21 pm
Hehe… if I were you I would just switch the pump off myself!! Seriously though… what a hard time this is for you all. I wish I had some wise words but I have just come home from a night shift of my own in one of those horrible hospitals! Love you guys to the moon and back.
Ali xoxo
# 6 Apr at 2:35 pm
Thanks for your honesty. You wrote it so well. Wish I could just do something. But I do send you big hugs as you walk this really hard road. I am also praying and following you. 🙂 Wish there was more I could say. Words are just not enough
# 6 Apr at 2:37 pm
Wow- what a hard space you occupy. People keep telling you how amazing you both are – and you really are. But I realise that you would SO like to be not amazing- just ORDINARY- without this terribly bumpy road to walk. Why do you have to walk it? I have know idea- and I so wish we could ease your load. It is easy to say ‘comforting’ things from the comfort of a ‘normal’ life- but just know- again- that God does love you and He really sees and feels your pain. Bless you heaps
# 6 Apr at 3:47 pm
As always Anita, you look to find something beautiful where others would find only proof of the opposite. Blow wind, blow. xx
# 6 Apr at 4:14 pm
Anita, I have been following your wee one’s journey and feel a bit of a fraud as I don’t even know your family! But reading your thoughts has really made me think about faith and prayer. I am a nurse, and used to be a paediatric nurse, and I cringe reading about the nurse who forgets to come back to turn the pump off before it beeps again in the night – I have done that so many times!! Your comments about the powerlessness you feel in the hospital culture are beautifully and eloquently written. I would love to see these comments get a wider hearing, particularly to paediatric nurses. “Parenting in a fishbowl” is how I have heard one parent describe being in hospital with their child. Could you negotiate some quiet time with your nurse – even half an hour where no one, absolutely no one, is allowed to come in? That may be impossible or of no help, I don’t know. So so hard when everyone else’s agendas come first, and your wee one, with so many teams involved, is at the mercy of many many agendas. All with best intentions of course, but exhausting, annoying and mentally and physically draining for all of you. I really hope you get some staff with you over the next few days who can look beyond the routines, can negotiate with you to make sure as much as possible that cares/rounds/tests are clustered and to give you some much needed breathing space. Do you have an Ipod or suchlike? Even if you don’t listen to anything, maybe you wouldn’t be bugged by well meaning strangers in lifts if you had some earphones in your ears!! LOL!! Thinking of you at this really testing time. Leeann
# 6 Apr at 4:17 pm
Anita, such an honest post, and this helps us all reading to know what to pray for you. As Fiona said, even though it doesn’t feel like it at times, God really does love you, He really sees and feels your pain. We are praying for you all. God bless you.
# 6 Apr at 4:40 pm
Dear Anita, Hamish,Aria and Asher,
I hope and pray you can feel the huge amount of love, concern, comfort and prayer that is going up for you, from the hundreds of us out here reading your oh so honest words from your heart.
The Shack is an amazing book, I too recommend it.
Sending all the love and strength and prayers that I can muster across the ether to you.
God bless you
Eve
# 6 Apr at 5:06 pm
Anita,
Your words are powerful and communicate so much. I would love to use them in my teaching of nurses. You don’t have to decide now, just let me know when you are ready. Thinking and praying for you all.
sandy
# 6 Apr at 5:27 pm
Dear Anita
That is one of the most powerful and heartfelt pieces I have ever read and we both feel SO touched by it. There is a truckload of empathy for you all right now. You might like to consider that if folk respond to your words the way they do……. then how much more will your Father in Heaven hear and value them?
Love from Rod & Margaret
# 6 Apr at 5:36 pm
Dear Anita, I hardly know what to say after reading your post. What you write is so real and you write it so well. Like Leann, I feel a bit awkward writing back to you sometimes as I don’t know your family personally. I hope our postings are of some help, in some, in any way. When I first became a Christian I was in my 30’s and I really couldn’t get a grasp on the love of God. I believed Him and feared Him, but I couldn’t get a grip on His love for me. One of the first times I realised his love and care for me was the day I realised He sees and hears me ALL the time, not some of the time. This might sound so silly, but up until then I don’t think I really believed that. Then when I read the Bible, I found people like David and Job who absolutely understood God could hear them, and boy did they take their case to God when life got too much for them. They were not feeling too spiritual or warm and fuzzy and they’d had a gutsful of what was happening to them. So they took it to God; they talked honestly to Him about how they felt. I think along with the warmth, and peace of the love of God, is also the love that comes from His invitation to talk openly to Him, and His promise that He is listening. And we are all listening too. May you know our hearts and minds and spirits are with you. I am now going off to find this wonderful-sounding book others here have recommended called The Shack XXX
# 6 Apr at 8:05 pm
Thank you for sharing your feelings with us.God also hears your thoughts and knows your hurts.He is using you in some mighty way which we don’t understand but someday soon we will. In the meantime prayers and pleadings to him on your behalf are going up.I pray for a better day for all tomorrow.
# 6 Apr at 8:21 pm
Oh darling, wish I could give you a big hug right now and tell you it will all be better soon. I struggled so much with having no control and power myself and almost lost the plot a few times in sheer frustration and tiredness. The only thing that helped me was to take back the control in the things I could control, however small. To this day I still always make my bed first thing I can because it was my (silly) symbol of something I could do to improve my mental wellbeing and the only thing, at that time, that I could control. Sounds crazy huh but you need to find something simple to have in your control, take back the power that you have to do simple tasks. I know even going to the bathroom is sometimes out of your control due to Aria or the medical side taking over but think of something just for you. Having some order in your head is really important to your coping. I did talk to sympathetic nurses too and had signs for the door to try and stop cleaners/other nurses and incidental people from coming in and out at will and waking Lara up from her naps (babies and hospital staff – what a combination that is!). The docs often ignored the sign but I could live with that as they crept in so I met them outside to talk and they would only wake Lara up if it was really important. You have rights and the right to respect too but you need to push for it and have someone catch your back (your nurse hopefully!), even if you have to renegotiate each day.
Hang in there, you will have better days when this won’t mean so much to you and you will get through this. Do they have hospital grandparents/play staff that can get you a break so you can have some quiet time on your own? A better day tomorrow hun!
# 6 Apr at 8:44 pm
Thanks for the other view point of hospital life.I try and let the Lord make me aware of the patients I feed in my work place and see thru there eyes,espesially when we have to go in and out a few times.Thank you.Dont forget you might be in your so called frumpy clothes but Jesus is renewing you more like Him, the immaculate people may only be that and no change of heart,the LORD KNOWS.In HEAVEN WE WILL ALL BE THE SAME.
# 6 Apr at 10:33 pm
Totally get it – you write profoundly and oh so truthfully…right with you my friend. No words, just love and prayers as you negotiate your challenging and frustrating world. X
# 6 Apr at 11:28 pm
You are in need of healing,love, respect, comfort and lots of sleep. May Papa grant you the desires of your heart dear one amen. Jesus thank you for healing Aria, Anita, Hamish and Ashe amen.
# 7 Apr at 2:03 am
Samantha has some realy good advise even if it is something small there is nothing more disheartening than the feeling of no power, I think the idea of a notice is realy good if it is not absolutely essential for people to be in the room then they dont need to be there.Dont forget to be kind to yourself.
# 7 Apr at 3:05 am
Anita – intentionally or not – and I’m not assuming either way – your post has spoken to so many nurses – and I’m one of them – thank you – as others have written: words aren’t much use sometimes, but you’re so very much in my heart and my prayers. viv. p.s your shorts and t-shirt appealed to me way more than the crisp formal attire you described!
# 7 Apr at 2:36 pm
Oh Anita, how you find the time and energy to write so profoundly I don’t know, but it is awe inspiring. Having experienced the Christchurch earthquakes I’ve been thinking often about control (or lack of) myself lately, and its very uncomfortable. I think we often kid ourselves as we reach adulthood, that now we’re in control, and most of the time it feels like its true – until its not. The relentlessness of your situation is inconceivable to me, and yet your graciousness shines through, beautiful and steadfast. Kia kaha Anita, our thoughts are with you all.
# 7 Apr at 8:03 pm
Your blog update is so true, and heartfelt. I can relate on the experience with you, I as well feel always so low in the hospital, you do lose your identity. I always think even though they are professionals, no one is more professional than you as a parent, you know your child better than ANYBODY, never feel down about yourself, you are a great mother, have a great family, and have a great spiritual connection with god. <3
# 10 Apr at 7:56 pm
Anita, Bless you. I hear your frustration and desperation! I too can relate to just getting to sleep for the 5th time and the stupid buzzer going off (so much the nurse said we’ll just throw this one out the window shall we) =)and want you to know you are being prayed for and upheld before our Father by many many people. We love you and appreciate your honesty and sincerity. God Bless you and Family Heaps.