“Avie’s life meant something and will always mean something – she will always be part of our life and Maddie always talks about her everyday.” – Monique van Damme
For Monique, her husband Dustin and their family, Christmas time is bittersweet. It’s an opportunity to spend quality time with loved ones, but also the anniversary of their youngest daughter Avaline’s passing.
At the 20-week scan at Royal North Shore Hospital, they discovered that Avaline, affectionately remembered as Avie, wasn’t developing as well as they hoped and appeared she had skeletal dysplasia as well as other genetic conditions inhibiting her growth. Having to cope with such a difficult loss and return to their eldest daughter, Maddie, at home the couple turned to their medical team and loved ones for support.
“We felt really supported with everything we were doing especially as it was a medical termination and there can still be a bit of a stigma attached to parents making that decision. We feel like we were really supported from Royal North Shore and Gosford hospital, where we delivered Avie. With our decision we were never made to feel like we were doing the wrong thing or that we had made the wrong decision.”
“The care we received from Royal North Shore was second to none – it was amazing. Our specialist at the time, Andrew McLennan, called me after we made the decision and to know we were supported made that difficult time for us a little bit easier” says Monique.
Avie was born sleeping at Gosford Hospital on the 23rd of December and Monique recalls how special it was to have used the cuddle cot. A cuddle cot is a special cot with a cooling unit that allows parents to have their child with them and gives them as much time as they need to create memories and to say goodbye. Monique and Dustin were very grateful to have these invaluable moments before saying their final goodbye to Avie. This is what inspired the family to fundraise and donate two cuddle cots to Royal North Shore Hospital Neonatal Intensive Care Unit.
“The Cuddle cot was really what pushed us to want to donate the cots … without having the cot we wouldn’t have been able to spend the time with Avie that we did.”
With the support of their wonderful social worker at Gosford Hospital, they also knew what to say to Maddie so that she would understand what had happened to her baby sister.
“Guidance on what to say to Maddie was such a huge thing, especially coming home on Christmas Eve to a 2-year-old, so excited about Christmas who was also excited about getting a baby sister. She gave me a lot of tools how to talk about Avie to Maddie and guidance on how to process our grief, however we wanted to. It really helped us come out on the other side stronger.”
“We also made the decision to make Avie very much a part of our lives and Maddie is a very proud big sister and talks about her a lot and we embrace it as much as we can.”
Wanting to channel her energy in giving back, and helping other families in a similar situation, Monique has held several fundraisers and intends to continue after the coronavirus pandemic restrictions ease. Her first fundraiser was with Bears of Hope, after receiving a support package from them at the hospital and inspired them to create a go fund raise me page for toy bears in support of Bear of Hope for Avie’s memorial in lieu of flowers.
It was being part of the special Bears Of Hope community that Monique and Dustin were able to connect with other families in similar situations and what they found that everyone was most grateful for was the cuddle cots. However, it was hearing the stories of those unable to use them that added to their inspiration to raise money for cuddle cots at RNSH in honor of their daughter as well as their friend’s daughter Halle, knowing they are helping to provide the gift of time for parents that they were lucky to have.
“I couldn’t imagine my loss if I didn’t have that time with Avie and even though we didn’t have as much time as we would have liked, we were given that opportunity because of the cuddle cot.”
Monique and Dustin want to let families experiencing similar loss and grief know that they are not alone. For this reason, they have created a not-for-profit where they deliver support packages called ‘Butterfly Boxes’ that include comforting item such as a hand-knitted blanket and beanie, candle, photo frame and a journal. All these items are lovingly created or donated my members of the community who have also experienced loss in some way.
Building connections as she creates those boxes has been a really special project for Monique and hopes that her next fundraiser will help raise money towards making more Butterfly Boxes.
“We weren’t just losing our baby, but we were also losing our lifetime of memories we wanted to create with Avie – so the butterfly boxes are our way of reaching out and touching families in a meaningful way as much as we can and letting them know they are not alone and that there are people around them to field support.”
When asked what she would like to say to the team at Royal North Shore, Monique has this to share:
“Thank you for the comfort and guidance, especially in our decision – we never felt judged, or alone in our decision and we felt very comfortable that we were being provided with the accurate information and support and love from all the staff – making that difficult time a little bit easier – thank you from the bottom of our hearts; being able to donate those cots, it meant so much that we were able to help the hospital we have a connection to.”
You can support the family’s Butterfly Boxes Instagram page here: @tinyangels_butterflyboxes