There have been times, when at my most rational and pragmatic, I’ve contemplated my life’s end and its implications for my eldest daughter. During these times, I confess I’ve hoped that her life didn’t extend much further than mine.
Chloe (nicknamed Mrs Chips) is profoundly dependent on others for all her care needs. She does not walk (without assistance) or talk, she cannot chew food and wears nappies. I constantly wonder what her life would be like without me and my conclusion is never a positive one. This extremely vulnerable person is emotionally attached to me, just as my other two daughters are. But the difference is that Chloe is not just reliant on my emotional support. She also survives on my interpretation of her signals (which can be learnt, to an extent), and my understanding of her history and past experiences (which cannot). I’m her external hard drive, if you like.
The only other person who carried this context was her father, and he has been dead nearly a decade now.
Her life now hangs in the balance as she lies in intensive care, suffering the culmination of a long decline in the form of an acute illness. The pragmatist in me recognises the positive side of this. But my inner pragmatist is no match for my breaking heart.
She started ailing about three years ago. Small things, like starting to receive hand-me-downs from her two younger sisters, crying in pain for no discernible reason, being less keen to get up on her feet, began to indicate something was not right.
I took her to her paediatrician who confirmed weight gain of a mere two kilos in three years. And thus began the long and winding road of testing.
Severe iron-deficient anaemia was the first diagnosis, and on that basis she was admitted to hospital. I was glad we’d found something, and the small voice in my head that would sometimes say, “She’s dying”, was temporarily silenced.
Cut to several months later and I’m suddenly asked into a small room by the consultant paediatrician for the ‘do not resuscitate’ chat. Hospitals are very sensitive in their dealings with parents, and it was emphasized that this was ‘just a chat’ and no indication of her future, per se.
We have, however, been descending through lower and lower circles of hospital hell ever since.
Just for clarification: the hospital Chloe is in is absolutely wonderful in every way. Apart from the fact that Monash Children’s Hospital is brand new, with state of the art everything, the staff, from top to bottom, are kind, gracious, intelligent and professional. We are unbelievably lucky to be there and mere words cannot begin to express our gratitude.
Circles of hell nonetheless. The first circle is admission itself. After a rather thrilling ride in an ambulance when Chloe’s temperature and pain spiked in reaction to an abscess on her back, we spent five hours in the emergency department. This isn’t bad at all, by modern standards, and we were well looked after. But it’s gruelling and uncomfortable and we were so glad to get onto the ward. When I say the ward, this place gave us our own room, with a bed for me and an ensuite bathroom. This is the public health system in Australia. We are very, very lucky.
So began the first new normal: the rounds, the food, the new routine. I tried to make her smile, make her laugh, let her do mischief like throwing the vomit hat to the floor. I stayed there constantly to make sure she knew she was not alone and that her needs were met. The new normal became being wistful about the plants I’d received for my birthday and knowing they were probably going to wilt. The new normal was worrying that the dog was going to get fat without his daily walks, that the other two girls were having some pleasant times in their Easter holiday. The big question was, “When are we going to get back home?”
We descended into the second circle when the antibiotics didn’t yield the results we were hoping for. Surgery became the next option as the infection spread through the muscles and tissue of her back. The new normal became admission to the intensive care unit and the suspension of all work and play. I knew she didn’t feel like smiling, but she joined in the “let’s pull the scarf off Mum’s head” game like a champ. The big question was, “When are we going to get back on the ward?”
The first time I heard the word “dying” in a sentence containing my daughter’s name, I went into shock. It was a Sunday morning and I’d gone home from ICU to catch up on much-needed sleep and family time. She had had another operation on the previous day to try and locate and clean the multiple infection sites in her back. The consultant was talking me through the troubled night she’d had and his grim words made my heart thump and my body shake uncontrollably. I cried with uncharacteristic gusto. This was more than a DNR chat now. I was being asked about her quality of life and the voice in my head from so long ago was being echoed in the words of the experts.
The new normal became daily meetings with medical teams (Infectious Diseases, Plastic Surgery, Adolescent, ICU), with her slipping in and out of consciousness, barely recognizing me. The big question was, “When do you think she might be able to come off the breathing tube?”
The next circle was the friendly contact from the palliative care team, “just to touch base”. We have delineated certain conditions under which resuscitation will not proceed. She waxes and wanes like the moon. We have settled on active treatment as long as she remains out of pain and distress. The new normal is constant scrutiny of her vital signs, making sure that everyone has said goodbye, a slight flutter of joy when she moves her arm. The big question is now, “How much is too much?”
Her sisters, 12 and 14, need constant reassurance, but that’s something no one can give. I use the analogy of a tight-rope walker. She’s treading carefully on a fraying rope. The medical staff are doing everything in their power to make that rope stronger, but she could fall off at any moment. It will be a long, long time before she’s on solid ground again.
People have been kind, sending thoughts and sometimes prayers. I could be described as a secular humanist, so I find the idea of prayer bizarre, but people need to feel they are contributing, so I don’t question their beliefs. That’s also the new normal.
The big question now is, “Did she make it through the night? Is she out of pain?”
Hours tick by, life goes on, deadlines loom. I’ve promised myself I’ll finish my next book on time, no matter what happens. It’s easy to see the hardship in the two hour round-trip to hospital, the unpaid bills, the undone housework, the other children, the animals and the plants. What’s harder to perceive from the outside is the enormous, exhausting effort of keeping total despair at bay. But I can if you can, Mrs Chips.
Which brings me back to my thoughts of what happens after my demise. I’ve been given the choice, at any time, to say, “Cease treatment”. Problems of her future could disappear. The new question has become, “When do I let her go?”
My only answer is, “When she herself decides.” I have opted for active treatment because I’m aware of the immeasurable determination my girl possesses. Though she can’t speak, my interpretation of her struggle is that she will make her own decision about when she’s had enough. Several times she’s gone very low, and several times she’s rallied. I can’t kick the legs out from under her now and I’m surprised I’m being handed that power.
All her problems would disappear and the question of her life after my death would be moot. But if I were standing in front of two buttons that said “live” and “die”, I couldn’t imagine a scenario where I’d press the latter. Perhaps that’s the next circle. I hope not.
Our precious and beautiful Chloe died peacefully in her sleep last night (12/4/18). Thank you everyone for your kind words and support.