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needs: Hospital and gratitude

She makes origami. She makes origami because it is small, it is quiet, it is hard for the brain and it is who she is. She makes origami because she has always wanted to say thank you in a meaningful way. She makes origami for the lady who brings in her meal tray. She makes origami for the orderly who takes her to her EEG. She makes origami for all the doctors at Rounds, for the ones that have the answers and the ones that don’t. She makes origami for the nurses. She makes origami for the mum who is crying. She makes origami for the kid next door that is alone. She makes origami for the phlebotomist who took her blood and never gave it back. She makes origami for the radiographer who places her in an MRI but stands on the other side of the glass, and she makes origami for the hospital teachers that hook up an iPad when she cannot move at all. She makes origami for the man who mops her bathroom that she can’t get to and for the physio that makes her cry. She makes origami to say thank you. And over the days, as I move through the hospital, I see her cranes on desks, trolleys and clipboards. Dashes of lovely from my girl to the world. She makes origami and it leaves her mark everywhere.

needs: Losing my cool in hospital

My girl had been admitted for 4 days and I had been with her 24/7. We were shades of ourselves in that room, our outside life paused, my single priority was the whole kid, not the medical mystery patient.

There were doctors there to work out what was happening and how to deal with it. There were nurses to administer care and there was an endless parade of orderlies to get her to tests, pathology techs to take blood, imaging techs for brain and spine pictures, stewards to bring food, cleaners for the room. An endless list of jobs and people who sorted their patch, their part of the patient. Weaving within those tasks, I existed, a mother of a whole kid.

The routine message from the doctors on Rounds was unchanged. They were going to assess further tomorrow; this might take a multidisciplinary approach and it might be there is no answer but an improvement. In the background of this refrain, little red flags were popping up. The back of my mind was pushing itself forward with alarm bells chiming, as every flag swayed in rhythm to my concern.

Then the moment came, the apex of all my worry and all her pain, landed a moment.

The doctor firmly, calmly batted back to my questions; “There is nothing I can do medically right now” and while some may have frozen with that statement and reeled at why the person who had all the power, knowledge, skills and resources couldn’t help, I’m not much for freezing.

It’s like the rodeo. It’s like I had been thrashing around in a tight metal chute and that statement opened released me, and all my fear, fatigue and frustration in the arena. “I agree, there is nothing YOU can do right now.” While we were in agreement, the shift in emphasis was clear, and my girl was more than uncomfortable with my departure from decorum. It was unfortunately time for me to shift gear and get someone else’s attention. My beloved answered my call, before the door closed behind the doctor.

From there, we had a lot of action, a lot of doctors and allied health professionals. By evening rounds we had a different team, and a plan that made sense to our girl. We felt like someone had looked at our girl as a whole, not her test results and had made sense of the puzzle. We got the response we needed, and had a roadmap to discharge. But at what cost?

I know I am her Mum and her advocate within the health and education system. I know I speak for my girl when she can’t speak for herself. I know her needs are best served by my vigilance and listening to that inner voice and choosing when to speak up. I know sideliners throw out terms like helicopter, bulldozer at me, weaponize the term resilience. I won’t accommodate judgement masquerading as advice. I am the mother of the whole kid, sometimes that comes with kindness and sometimes that spurs a fierce force. I must speak when she needs care. I also know that there is a cost.

The heart racing, the tight chest, the gripped breath all those physical signs that I am not coping were at the surface. I was exposed. I didn’t like the feeling that swallowed me as I levelled my direct, firm stare and hard tone. My unflinching insistence, and brittle request, sharp words and staccato sentences, the insistence for exactitude and demands for clear commitment and rigid accountability – they are confronting to receive and hard for the people around me. It also leaves a raw scar that I know, dwells in me still.

I know what it means to stand for what she needs, and I know the personal cost.