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Maisy's Story

As told by Amanda, Maisy's Mum:

My baby daughter is four weeks old. My four-week old baby daughter needs heart surgery.

We are at the hospital in which she was born, one month ago today. On Tuesday afternoon, we took her to the GP. We wanted to be cautious in the midst of the COVID-led reduction of post-natal support to telephone consultations. We wanted to have a medical professional physically check our baby, to confirm that she is healthy, progressing well.

On Tuesday evening, our baby was admitted to hospital with two holes in her heart.

She must gain weight before her surgery, but this is difficult when every feed costs her a huge amount of energy. A long and uncertain path looms before us. I don’t know where it will take us. I don’t know anything.

That’s not true. I know the odds. I know there is a good chance she will recover in time, with the right care. But odds are odds, and in the end, someone is always left on the losing side. I know there is a support group for parents in our situation. This comes as a cold reality-slap: if a support group exists, it must be serious. I know we will keep walking this path, no matter how painful, because she needs us to keep walking. I know that any food I eat, any exercise I force myself to take, is keeping me fit enough to care for her.

I know I want to pick her up and run away. Run to another place, where none of this could ever happen. I do not want to stay positive, to stay strong, or to have faith. I do not believe that everything happens for a reason. I am angry. Incredibly, irrationally, angry. At everything. The whole world. Platitudes ball up like oil and slip right off me. I flail about looking to blame. Dig deep into history, searching for a target, for some past wrong at which to direct the force of this fury. I blame myself. What if I did something, or didn’t do something, while I was pregnant? It is useless to be reassured that this is not the case. This is grief. This is the pattern of grief. There is no pattern.

I make lists. Shopping lists, to-do lists. I wash hair, change sheets, collect parcels – those mundane tasks that refer back to that other normal, the Tuesday Morning Normal. There are the moments when that normal reappears, when the usual, diurnal tasks offer a welcome distraction. There are the moments of unexpected levity, moments of dark humour. There are the moments of grim resignation and determination. And there are moments when the news returns to the surface, and the wound gapes again, fresh, acute, and feels as if it will never knit.

Only one parent is allowed at their sick child’s bedside. COVID restrictions again. At changeover time, I sit in the foyer with the other traumatised parents, waiting to swap places with my husband. We spend a precious few minutes together before saying goodbye for another day. We communicate medical information by phone and text. For the one on hospital duty, there is no partner to take over when exhaustion and sadness overwhelm. There is no partner to run downstairs for food, no partner to embrace, to chat with about nothing, about things before and beyond this moment.

My husband. I have always known him to be a uniquely devoted, ethical person, a resilient man who actively lives his values and admits his vulnerability. These days, these qualities have been tested, and amplified. He is my home, my foundation, even – especially – when he is broken with sorrow alongside me. He is alongside me. We are in this together, that is clear, and for that I love him more with every passing minute.

I am still raw from the birth. My stitches hurt; I have lower back pain, digestive issues. All unremarkable, common to many birth stories. But all that is good. All that externalises the pain. I want to rip out my own heart and give it to her. No, that’s too simplistic. I want to live; I don’t want her to grow up without her mother. I want to see her grow up. I want to be with her at her final check-up, many years from now, to receive the news with her that these days are well and truly behind her, something she cannot even recall enduring.

In the meantime, on my days at her hospital bedside, I sing to her. Jazz standards, like my grandfather used to sing to me. Frank Sinatra, Ella Fitzgerald, Bobby Darin. I sing along to Rufus Wainwright, predicting that together we will, like Rufus and his beautiful queen, wreak havoc on the status quo. I read to her: from Goodnight Moon, also from The Mirror and the Light, the weighty Hilary Mantel novel I am currently enjoying. I mark out the days with a few small comforts, for me, for my husband and, hopefully, for our daughter, and await that moment when normal shifts again, and we find ourselves on a new path, that takes us somewhere better than here, somewhere she so very much deserves to go

- Mum Amanda