They told us our son Lewis would ‘declare himself’ at birth – whether he was a survivor, or not. When he was born, I smiled for the first time after crying most of last 20 weeks of the pregnancy. My husband cried for the first time.
When he was stable enough to be transferred to the children’s hospital, Lewis grew stronger and stronger. The doctor said he’d be home before Christmas, six weeks away. Yet rumours of a second hernia followed him from the public hospital to the children’s hospital. The neonatologist looking after him said that bilateral hernias are as “rare as hen’s teeth” but pushed for early surgery. The surgeon insisted that Lewis wasn’t strong enough and needed more time but despite this, they whisked him into theatre.
We almost lost Lewis on the operating table. When my husband and I came to see him in the ward he was still surrounded by doctors trying to stabilise him.
There never was a second hernia.
We looked on helplessly as Lewis’ oxygen saturations spiralled down to levels I’d never seen before, sending off a cacophony of bells and alarms on his monitor. The noise of the machine whirled in my head, following me everywhere like a person suffering from tinnitus. The more alarms I heard, the more my despair grew. Our once-pink baby was turning a dusky-blue colour.
A nurse asked if I’d like to meet the family of a little girl being discharged the following day with the same condition and reassured me that it was normal that these babies went ‘backwards’ after surgery for a while. That same afternoon doctors told us they were running out of options and suggested switching to a new type of drug. For a while we watched hopefully.
At 2.30am I had a call saying that we should come back to the hospital. We held Lewis into the early hours of the morning and when the first doctor on duty arrived she urged us to let him go. We didn’t want to but we were both overwhelmed with exhaustion. I told him over and over again how much I loved him and how proud I was to be his Mummy. I reassured him that it was okay to go and that he didn’t have to keep fighting. I thanked him for being my son, and told him he how brave he was. I asked him not to worry about me.
Gradually the doctor and nurses unhooked him from the various drugs and machines. At 11.00am I felt his once-strong heart give out in my arms.
I only cried once at the funeral. As I left the chapel, a distance relative embraced me. My body unexpectedly emitted a howl that sounded more wolf-like than human. Turning my back to the chapel was like turning my back on my baby son, for I knew his body was heading for the furnace.
Now, there are a lot of things I haven’t been able to do, like enrolling Lewis in preschool this year. Because he is not here. Some people think they know our family but they don’t know about Lewis. But he’s no secret. At times I want to scream his name or just talk about him like other mothers do with their children.
Even in death a mother wants to talk about her children because while she lives, their memory lives. But instead I lock him away like his ashes, contained in a tiny, square silver urn resting on a shelf in my bedroom out of reach from little hands and those who wouldn’t understand.
Occasionally I visit the plaque at the crematorium but it feels strange. It all seems pointless because he is dead. What matters are the memories – when his heart raced, or he turned his head or opened his eyes when we came close to him. Checking on him in the night, holding his hand, talking to his nurses, doing his ‘cares’ and pumping and labelling the breast milk he never drank.
All these moments I hold dear in a vault inside me, sealed until I die.
“A gender-equal society would be one where the word ‘gender’ does not exist: where everyone can be themselves.”*
I’ve always been aware of gender conditioning and actively tried to combat any lingering prejudices or stereotypes in my own parenting, even down to encouraging dolls with my boys when they were little. It’s great to read people writing about gender issues they’re experiencing with their kids. For too long these subjects have been discouraged or silenced. I’d love to publish some more creative writing on this topic, especially if you are struggling with a child who actively tries to move away from gender normative preferences. A society where everyone can be themselves – thanks Gloria for those aspirational words.
* Gloria Steinem