When I started Have Wheelchair Will Travel I always envisaged the website, and particularly the Facebook page, should have a community feel. I didn’t want it to be clinical and over time I’m happy to say we’ve got to know many of our readers, sometimes virtually and many we’ve met in person. We love the fact people feel they know us well enough to introduce themselves when they come across us in our travels. So, recently, when one of our families suggested we might like to visit them at Bear Cottage we didn’t think twice. I’ve heard so much about Bear Cottage but I don’t know anyone who uses the service and was keen to learn more.
Bear Cottage is a children’s hospice – a very special place that’s dedicated to caring for children with life-limiting conditions and their families. Bear Cottage believes, “that life, however brief, should be enriched, enjoyed and celebrated.” They say, “life is for living.” If you’ve been reading our website for a while you’ll know that we believe every minute should be embraced and lived to the fullest so we love Bear Cottage’s philosophy.
Bear Cottage is located in Manly, on Sydney’s Northern Beaches. Manly is somewhere we go regularly to enjoy the fresh air, pretty seaside location and accessible waterfront walks. Bear Cottage has been purpose-built to create a home-like environment for children and families with the added support of nursing staff and a dedicated band of volunteers.
Walking into Bear Cottage we felt a warm and friendly atmosphere envelope us. It felt like we’d arrived at a friend’s house with lovely children’s artwork lining the walls, photos of children and staff and many happy smiling faces.
We were also met by two of our lovely readers who were staying with their children.
Looking at a room one family were sharing, it was just lovely to see the Mum had her own area which she could share with her husband and small daughter. Beside it was an interconnecting room for her daughter who needs round-the-clock care.
Although there was a hoist, a hospital bed and an accessible bathroom there was no clinical feel. The bed was draped in a beautiful bright home-made quilt, pictures, books and a television all made this a comfortable and functional room.
Bear Cottage is flexible, offering siblings and parents the option of staying or alternatively children can be left so families can have a break. The facilities provided are customised to a family’s needs.
What really impressed me, was the way Bear Cottage takes care of family members with one of our readers telling us about the fantastic sibling camp her son had attended. She commented on how the siblings will often chat about things which they don’t share with their parents. On the weekend we visited, some of the Mums were being treated to a Mum’s camp which included a special afternoon tea, tickets to a show and a cruise to see the Vivid light festival. It’s such a great opportunity for families to connect and share. One of our Mums told me that this sharing of information was invaluable with finding solutions for her daughter’s special needs.
I’ve spoken many times about how difficult I initially found the idea of respite. I can only imagine it’s even more difficult for families of children with a life-limiting illness. It would be hard letting go of control and having someone else care for your child. There may even be concern about whether it would be confronting seeing other children with a life-limiting condition. Judging by the family atmosphere, the smiling volunteers and caring staff we saw during our visit, I say give it a go. At least have a look, because the families we spoke to seemed to be receiving much needed support, time-out and rest. I asked one of our Mums what life is like at home for her with her daughter and she told me of the time spent on overnight feeds, the need to sleep with her daughter due to seizures and the exhaustion of doing everything for her.
I could see the Mum’s exhaustion but I also saw the absolute love and devotion she has for her child. Bear Cottage was providing her with the rest she needed to move through the next few months until her next stay.
Bear Cottage is about enriching the children’s lives and there’s a beautiful garden with musical instruments (all at wheelchair height), a liberty swing, a multi-sensory room, sensory garden, spa and more.
A hot lunch and dinner is provided for parents and there’s a beautiful large outdoor patio area for families to share. It was lovely to see one family sitting out there entertaining their extended family. I commented that I imagine even having somewhere to entertain without tidying the house and with the added support of staff if your child needed medication or care must be a relief. Socialising can be so difficult for families when they have a loved one who needs intensive care.
Children staying at Bear Cottage receive 24-hour medical care, play, music and art therapy.
There is of course the reality that the children using the services have a life-limiting condition and Bear Cottage offers support with their end-of-life care. Families can choose to bring their child to the homely atmosphere of Bear Cottage rather than a hospital for their end of life. Parents and siblings are offered bereavement support and the comfort of a staff who have become like family over the years.
Bear Cottage is the only children’s hospice in NSW. A child can be referred by anyone provided they meet the admission criteria. Families do not pay.
I wasn’t sure what to expect when we visited. I wondered if our kids would come away sad and wishing we hadn’t visited. It was the total opposite. Although the families at Bear Cottage have significant challenges we came away feeling happy we’d visited and had the opportunity to see the wonderful work the staff and volunteers do.
We’d like to thank the lovely family who invited us and acknowledge all the wonderful staff of Bear Cottage who make a difficult time a little easier for families.
If you’ve read this and you feel like you’d like to do something to keep this wonderful work going, we’d like to encourage you to participate in Bear Cottage Superhero Week 23-29 July. With the motto “All Children need heroes, some need superheroes” Bear Cottage is asking the public to support them by –
Theme your weekend activities – get sponsored to jazz up your outfit with some special superhero accessories.
Stay in and hold a Superhero party – show a classic Superhero movie and charge your friends for tickets, popcorn and drinks.
At School go dressed as a Superhero and give a gold coin donation (obviously with the cooperation of the school principal!)
At work hold a Superhero fundraiser with proceeds going to Bear Cottage.
Register your support for Superhero Week 2017 at superheroweek.com
We’d love to hear about your experience if you’ve stayed at Bear Cottage which you can share either in comments below or I can post anonymously on your behalf if you email me Julie at [email protected]
We’d also like to know if you’d like to meet up for a Have Wheelchair Will Travel Superhero picnic to help Bear Cottage.