“Being the parent of a child with a life-limiting illness isn’t easy. It is tough, it is stressful and it is tiring. Bear Cottage is the only place we feel normal.” Fiona, mother of nine-year-old Abi and 11-year-old Max, who lives with Batten Disease*
When Max was diagnosed with Batten Disease, we had no idea what his future held. All we knew was that our little boy was going to die.
Max started having seizures at the age of three. By the age of four he had started to lose his speech and mobility. I spent those first years crying or constantly on the phone to the paediatrician. It wasn’t until he was five and a half that we received his diagnosis.
When we first heard about Bear Cottage I was very apprehensive about going. It was the fear of the unknown I suppose but I was so happy there was somewhere we could go as a family for some respite, where all the meals and nursing care was included. Bear Cottage far surpassed my expectations – it had everything we needed and more.
Because Max matters
As a parent, it can take time to feel comfortable enough to hand over the care of your child to someone else, especially when they have special care needs. The first time we came to Bear Cottage, I didn’t want to hand over Max’s medication, I didn’t trust that anyone else could look after Max as well as I could, particularly not a stranger. It didn’t take long though before strangers became friends.
At Bear Cottage, we’re not just faces – our names and our histories are known and we feel a part of everything.
The nurses see lots of children with different conditions but the amazing thing is how well the nurses understand each individual child. It’s one thing to know a child’s medical needs but another to understand their condition. The nurses know Max’s condition so well and are able to recognise the specific things that affect him, which is huge. I can get advice about symptom management, I can talk to the doctors and nurses and if I’m not sure what to do about something, there is always someone there who can reassure me.
As well as receiving the best medical care, Max is also able to have fun at Bear Cottage. He loves being out in the garden and on the Liberty Swing and he really enjoys visiting the sensory room. During our last stay, Max celebrated his 11th birthday. We had his nurses, volunteers, as well as some of the families we’ve met over the years who come together to celebrate with us and I was just overjoyed.
That same day Max also had power wheels fitted to his wheelchair, which was a huge thing. I’ve never been able to take him out for a walk before because I can’t get him up and down the hills and for the first time, I was able to walk out the front door and walk him straight to the beach. It was so liberating.
I’ve come to realize Max is in the best hands at Bear Cottage. Now, when I walk through the doors, I literally hand everything over, I give Max a kiss and know he is in great hands. But more than that, it allows me to be Max’s Mum rather than just his carer. I can just sit in the sun and enjoy being with him. I am also able to take some time out for my own respite and spend time with Abi.
Because I matter
Words just can’t describe the luxury of being able to just let go. It is just unbelievable that there is a place like Bear Cottage that makes this possible. Full time housekeeping staff means there is no house work to be done and there are chefs to provide nutritious lunches and dinners every day.
It’s the little things like not having to cook that make such a big difference. In our daily lives, cooking is such a big thing and I’ve come to hate it because it is a huge physical chunk out of the day when I’m already so wiped out. Here I can just concentrate on being Mum and take some time out to relax.
Really the only thing I have to worry about when coming to Bear Cottage is how long it will take to get here. Once we are here it was so worth it. We love it because everything is so accessible and there is so much to do but the biggest thrill is the actual break. Bear Cottage is the only place where we are free with no restrictions. It is also the only place that we feel normal.
I’m forever being told it’s important to have “me” time, but I have a sick child and an able child – it’s just not possible. Not in the real world anyway, but Bear Cottage makes it possible.
Here, I can actually take some time to look after myself, confident that Max is receiving the best care – it’s an amazing relief.
I recently attended one of Bear Cottage’s Mum’s Camps and that chance to be pampered was absolute luxury. It was fabulous hanging out with the other Bear Cottage mums, sharing our similar experiences and chatting about life over dinner and a show. For a couple of hours, we were able to be normal.
I think seeing the other children and their conditions and meeting their parents, really helped me accept Max’s condition and was so beneficial from a mental and emotional perspective.
Because Abi matters
For my daughter, Abi, having a brother with special needs is all she has ever known. But it is still hard on her, which is why Bear Cottage is so valuable.
Bear Cottage means I am able to spend one-on-one time with Abi, and that has helped enormously. Abi understands what is happening with her brother and that can be daunting for her – I feel sometimes she wants to break away from the life that she has. Bear Cottage gives her that opportunity and helps to add a bit of normality back into her life.
On our first visit to Bear Cottage, Frankie the Assistance Dog greeted Abi at the door and for her that was the greatest thing. Frankie really broke the ice and made it feel like a real home. I have photos of Max and Abi playing on the floor with Frankie. I treasure these memories.
Since then Bear Cottage has become about the freedom, the spa, the beach and the interaction with other families. Abi loves meeting and playing with the other siblings who are staying at Bear Cottage. She has learnt to interact with children of all ages and I guess it makes her realise that she’s not alone in this – there are other families like ours.
She is more understood at Bear Cottage than out in the real world and I think she can sense that.
The staff at Bear Cottage also realise Abi and I need to live a normal life while we are here. Normally I don’t like to take Abi out of school but because Max is in the end stage of his illness, I’ve decided that rule shouldn’t be so rigid. I’m facing the reality that something could happen to Max at any time and if that happens, I want Abi to be with us. Thankfully though, there are staff like Emma, the Child Life Therapist, who can help Abi with her school work to maintain her routine and ensure she doesn’t fall behind.
Because memories matter
Every occasion we have been at Bear Cottage has been memorable in a different way – so much more than people realise. We have made keepsake handprints and trees that are amazing. I have loads of things on my wall that provide reminders of our Bear Cottage days and countless photos from all our amazing experiences, including Santa visits, trips to the Zoo and so much more.
One of the most beautiful projects that the family has been involved has been working with Belle, the Music Therapist, to record Max’s heartbeat and then set that to music with the heartbeat providing the rhythm. When I listened to it I just burst into tears. It is a priceless memory that I will have it forever!
For our family, there is no value that can be placed on the services provided by Bear Cottage. It holds a very special place in our hearts and the memories we have created there are ones we will cherish forever.
Today is World Hospice and Palliative Care Day – a day which highlights and celebrates the support that Hospices and Palliative Care services like Bear Cottage provide to those in need -because every child and every family truly matters.
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This article was first published on the Bear Cottage website.
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