First-time mum on parenting a baby with Down syndrome: “I cannot do this”

The desire to have a baby is a huge step into the unknown. Couple this steep learning curve with a baby with additional needs and many parents are wide-eyed and white-knuckled, hanging on for dear life. Stand-up comic Bethany Van Delft shared her experience and it’s one you need to hear.

A mother gets surprising news about her newborn

This story about a mom finding out her newborn daughter has Down syndrome will touch your heart. (via The Moth)

Posted by The Scene on Friday, 2 June 2017

The perfect baby

Bethany told her story to an audience at a The Moth event. (The Moth is a podcast and event series that celebrates storytelling.) 

In her presentation, Bethany explained that she became pregnant with her first child in her forties, so not only was she in for an adjustment after years of flying kidless, there was much talk of “elderly primigravida” and “advanced maternal age” and “miracles” and “geriatric pregnancy” as the months flew by. 

Despite this, Bethany described her pregnancy as “perfect” and anticipated her new baby with excitement, wonder and delight. Warned that she was in for a long labour, tiny Lucia Esperanza had other ideas, arriving in just 20 minutes on her own schedule. Describing the moment she first held her little girl, Bethany said she quickly realised things were not as she’d expected.

“So they put her on my chest, and I soaked in this little person I’d been carrying around. And I saw her little chin and her heart-shaped mouth and her button nose and her folded ears. And I saw her almond eyes and  my heart stopped and I asked Jayme ‘does she look like she has Down syndrome?’ And Jayme said ‘no’,” Bethany remembers.

“Then I didn’t feel a rush of love. I felt a wave of fear and anxiety.”

Trisomy 21

What followed, Bethany recalls, was what might be described as grief as a whirlwind of tests and fact-finding seemed to gather its own momentum. Lulu did indeed have Down syndrome – or trisomy 21 – a genetic condition that happens when a baby has three copies of the 21st chromosome instead of two. 

Her prenatal care had revealed no sign of Down syndrome and she’d forgone the invasive test that diagnoses it during pregnancy as it involved a risk of miscarriage. Bethany had already suffered two miscarriages in her forties and did not want to risk never having a baby.

“I cannot do this”

Post-diagnosis, Bethany was propelled into a fog of shock and sadness. Everything around her was a reminder of a different expectation, of a different life, as she struggled to come to terms with this new little person. She felt things would never be okay.

“Just give it some time, she’s our Lulu. Just give it some time,” partner Jayme told her, but Bethany felt distressed, disconnected from her baby and devastated by her first days and weeks of parenting a child with additional needs.

“I cannot do this. I am not this kind of mother. I am not cut out to be this kind of mother,” Bethany recalls thinking, explaining that a kind of “Robot Bethany” took over and she forged on because she must.

As the weeks became months and she learnt to care for Lulu, she faced seemingly endless related challenges. People didn’t know what to say. She didn’t know how much to say. People were uncomfortable. They said the wrong things or made the wrong assumptions. Or all of the above.

Life was very, very hard. Bethany felt unsupported and alone, completely unable to share her fears and experience of parenting so far with anyone around her. Something had to give.

New normal

It was only when the family went on a short holiday with some friends that she was able to slow down, and eventually confide in one of the women on the trip. Bethany said as she slowly unraveled and unloaded the confusion and sadness she’d been feeling since Lulu’s birth, things became clearer.

“She was our Lulu, our light and our hope,” Bethany realised.

While parenting a child with Down syndrome has challenges that are unique, it dawned on her that there were universal struggles too.

“I realised that all moms cry a lot. All moms doubt their ability to raise a child. All moms worry about the future,” she told The Moth audience.

Time spent away with people who wanted to get to know Lulu helped her see her beautiful, funny, sweet and determined baby through new eyes.

“I used to wish I could go back in time and get that test after all. But now I wish I could go back in time and allow myself to feel the joy that a new mother feels. Because that’s what I was.”

 


What is Down syndrome?

Down syndrome is a genetic condition, and not an illness or a disease.

Humans are made of millions of cells – and each cell is comprised of 46 chromosomes.
People with Down syndrome have 47 chromosomes in their cells instead of the typical 46.
They have an extra chromosome – chromosome 21.

People with Down syndrome have:

  • some characteristic physical features
  • some health and development challenges
  • some level of intellectual disability.

These can vary from person to person.

You can read more about Down syndrome – or find support – at Down Syndrome Australia.

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