I’ve been struggling with writers block. I have a lot of thoughts going around in my head yet when I come to write… nothing.
So although I never intend to share photos on this blog, these photos are just saying more than I can. I think they are vague enough that you cannot actually see her face as she is now, and that is important to me.
Despite her sometimes paralysing fear of new situations, F has gone off on a 3 day trip with school. There will not be any phone calls home and she is ok with that.
She came home from school yesterday and packed her own bag. Using the “things to bring” list from school, she adapted it for her needs (2 pjs are just not enough so she took 4).
She mumbled that they will probably try and wash her hair and that will be a problem (that’s for a post still be written)
This morning she told us that she was going to miss us and we hugged. She even gave me a kiss (she hates kisses).
Then she wheeled her suitcase out to the bus and off she went.
I’m in awe. So proud and just can’t get my head around this to even think about all the things I want to say. She’s 6 and a half.
I just want to preface this post with a statement: the majority of the doctors and health professionals I have met are good. My daughter’s team are fantastic and are one of the main reasons I will never move away from Amsterdam (and maybe they don’t know this but they are not allowed to move house or change jobs either!)
This post is about that rare health care professional who leaves an impact, who just blows you away. But not in a good way. So here’s my story.
The first time that I ever felt defeated it was not because of the demands of the illness, it was because I was face to face with the most idiotic doctor that I have ever met.
At 14 months my daughter had her second operation; to place a PEG feeding tube. A hole is cut through the stomach to the outside and tube is inserted and held in place (by the plastic triangle you see in the picture).
The operation went well and a week later they removed the plaster that was placed underneath the white triangle (I only know what it is called in dutch, plaatje). It all looked good, no infection so we went home.
At home I noticed that her clothes kept on getting wet. At first I thought she had spilled something on herself but two clothes-changes later I realised that she was leaking. It was like a magic trick: her clothes were dry, she drank from her bottle and abracadabra, her T-shirt was wet. I did all the checks: triangle in place, not too loose; clamp was closed; no holes. The PEG was ok but she was leaking directly from her stomach! It is bad enough that her kidneys are leaky but now everything she drank just came straight out again in seconds!
How could we stop her dying from dehydration if nothing stayed in? I know that this cartoon and these words don’t really go together but this illustrates what was happening (and I use humour to deal with almost everything).
I took her to hospital and she was admitted. It was the weekend so we had to wait hours for the gastro specialist to come. (A piece of advice – if you are going to get sick and go to the hospital, don’t do it at the weekend. It’s like a ghost town).
Finally the gastro doctor came to see what this obviously crazy mother (me) was getting her knickers in a twist about.
I explained. She looked at me like I was a moron and told me “they always leak a little bit in the beginning. It’s normal. The hole needs to close a bit and that takes a week or so”.
She wouldn’t listen to me; that is was a flood, not a drip.
She didn’t listen to my explanation about Bartters; that my daughters condition means life threatening dehydration and she can’t afford to “leak” for a week or so.
She patronised me some more and I cried.
She walked away.
I had no words. I had been dismissed as if I was a panicky, neurotic mother who jumped at her own shadow.
We had survived 14 months of various calamities such as septicemia, frighteningly high fevers, gastritis, weeks in intensive care, non stop vomiting and I had stayed positive and pragmatic. Now I felt helpless. I knew that we were going to lose her. Not because of the illness but because of arrogance and stupidity.
I was not going to let this happen!
I called the nurse and asked her to watch. My daughter was sitting up and I gave her a drink. The nurses eyes widened and her eyebrows shot up as my daughters clothes became drenched. She looked at me with apology in her eyes and dashed off.
Investigations were done. It turns out that they had cut the hole too big. We came up with a plan: gauzes, regulate the rate of fluid with the feeding pump, only little sips for my thirsty baby.
It got resolved. It often does. But we need to be more than parents, more than carers. We need to be crusaders, ready to withstand the lashes of disdain and condescension meted out by that special group of arrogant doctors who believe that just because we are parents, we know nothing. It only takes one doctor like that to crush your spirit.
Most of the doctors at our hospital are great (please don’t ever develop your career and move on, stay here for us!) and my daughter was alright in the end.
But I will never forget the day when that doctor almost killed my baby because she was too arrogant to listen and too stupid to see.
So to all you good doctors and nurses out there I want to say thank you for listening. We parents sometimes get in the way, ask a lot of questions, insist that you really do just check that again. It’s our job. Thank you for knowing that part of your job is to let us be heard. We are a major part of the care team.
For a while now I have been contemplating the question
“is it possible to experience pure joy once the ignorance of childhood has gone?”
I’m thinking of the phrase “ignorance is bliss” when I pose this question. We all lose our ignorance as we get older but there is something about chronic illness that brings a lot of knowledge: knowledge of pain and suffering and icky stuff. Not so conducive to blissful feelings.
I have a draft on this topic and it starts with this:
“when I look at my daughters and their amazing capacity for joy I see a pleasure that comes easily. A pleasure in a new discovery like what happens when you blow up a balloon and let it go. In daring to jump and succeeding, or failing and landing on their butts, giggling. I see and I wonder how they do it.
How do they surrender to the moment completely so that in that moment they are joy?”
I came across this postcard on Facebook the other day (thank you PowerPlug! (Motivational Quotes) ) and I think the answer lies in the first sentence of this quote:
They don’t need a reason. They are just happy, most of the time.
Don’t get me wrong, it’s not all roses. The thorns are there too. The tragedy of denial “don’t eat the snail, take it out of your mouth!!!” is an equally vivid, full blown experience. It is also a wonder and and awesome sight to behold. the rage followed quickly by the sorrow. Then, in a blink of an eye, it is gone. (Yes 3 exclamation marks are necessary; she wasn’t trying to chew it, she was sucking on it. Excuse me while I heave again).
As adults we have had many experiences, good and bad. We tend to tone down the joy and try to mute the sorrow. We have gained knowledge and developed our consciousness. We have learnt how to choose what we want to study at school, where we want to live, what haircut and clothes etc and these are all fine. But are they enough? Do these choices give us a fulfilling life? Do they make us happy? I say no, no they do not.
Instead of the usual choices let’s do something different. Let’s choose how we feel.
Yes I still need to figure out what happens to bliss once you get “knowledge” but today I am choosing to be happy. For no reason.
amber rahim 