As a bubbly toddler, Monique Sutton was brimming with light and life.
The precious 20 months they shared together “changed the life” of her mother, Megan.
“People think anyone with Down Syndrome is always happy, but that's not true,” Ms Sutton said. “She was just a beautiful little soul.”
Born with a hole in her heart, Monique had to endure three major surgeries in the first 12 months of her life.
After that, her family thought she had finally turned a corner; her new heart was “fabulous”.
She managed six weeks without seeing the inside of the John Hunter Hospital.
“She was able to get on with her life, finally,” Ms Sutton said. “She started to learn things other babies were already learning.”
But in August 2014, a case of bronchiolitis rapidly turned serious. Monique died in her mother’s arms the following month.
Ms Sutton is determined that her daughter’s memory is not forgotten.
“I find ways to bring her up in conversations,” ” Ms Sutton said. “I couldn’t imagine burying the thought of her, as though she was non-existent.”
Ms Sutton will be among the parents to gather at Sandgate Cemetery this Sunday, as a remembrance service is held for those who have lost a baby before, during or after pregnancy.
The service will be held in the Garden of the Innocents, to coincide with an international day for pregnancy and infant loss remembrance.
Those who attend the service will also be invited to take part in an “International Wave of Light”. It will see candles lit at 7pm in different time zones across the globe, to form a continuous chain of light for the little lives lost.
“It’s quite a beautiful service,” Sandgate Cemetery Regional Manger Glen Amies said of the event, which is in its second year.
“The Garden of the Innocents is quite an important and special place within the cemetery. It’s a place where people can come and remember the babies and innocents that were lost and buried here. A lot of those are in unmarked graves.”
Megan Sutton has gradually learned to live with her loss, becoming involved with the charity Red Nose Grief and Loss.
She has also established a thriving dance school for children with special needs in Newcastle, building it up to around 50 students.
“We need somebody to say this: ‘don't be ashamed’ or ‘it’s not a taboo topic’,” she said.
“I do understand some people do get awkward around others that have lost a child. There's nothing for them to be awkward about. It’s reality. It happens.”
- The service will commence at 6.15pm with supper to follow. RSVP to Glen Amies on 0431 365 312.