“Claire House was our sanctuary, our happy place, without them there would have been a void.”
Paul and Angela never imagined needing a children’s hospice, but here they explain how Claire House became a sanctuary of love, kindness and support for them and their son Jude.
You don’t know how important a children’s hospice is until you need it, until you are thrown in to the whirlwind of having a poorly child.
Ange had a perfect pregnancy with Jude, it wasn’t until he was born that we knew something wasn’t right.
Jude was adorable, he was just beautiful and we loved and adored him, but he didn’t move a lot and we didn’t know why.
He would have terrifying seizures that were uncontrollable, sometimes he could have 15 a day.
It was tough, we didn’t have any answers at first.
It took months of testing, until we were told that Jude had a condition called D-Bifunctional Protein Deficiency. We knew the prognosis was not good and that Jude would need 24-hour care. He regularly needed oxygen, was fed through a tube into his tummy, required numerous medications and his condition affected his eye sight and hearing.
That’s when we were introduced to Claire House Children’s Hospice.
At that point, we didn’t believe it, we hadn’t registered the severity of the situation and were confused as to why we would need a children’s hospice.
We were introduced to Claire House nurses Laura and Kat when they came to visit us in the hospital, they told us all about Claire House and took us to have a look around.
You imagine a hospice to be clinical and sad but it isn’t, we fell in love with the place.
It wasn’t until Jude was 10 weeks old that we were told we could take him home, but it was daunting. As much as we wanted to bring our baby home for the first time, we were scared.
Prior to bringing Jude home, we were able to go to Claire House for a week, knowing that his care, medications and feeds were our responsibility, but that the nurses were on hand if we needed any support.
The team were so reassuring and they built our confidence so that when we did go home, we knew we were prepared and that we could do it. The nerves were still there but the team at Claire House helped to put us at ease.
We’d come and stay at the hospice regularly, the staff would always make us feel so welcome and they would involve Jude in lots of activities whether he was in the art room creating pictures or making lots of noise in a music session.
At Claire House we knew Jude was getting the best care and they helped us to create so many memories.
They’d organise trips to Chester Zoo and make keepsakes of Jude’s hand and footprints. We attended Christmas carol events and met Archie the therapy dog. It was Jude’s first time meeting a dog and I remember seeing his little face wondering what on earth was going on.
Jude loved the bath, we’d swish him around and he’d look at the lights. He liked sensory things so spending time in the light room and the hydrotherapy pool was something he loved.
Jude’s health took a sudden turn at 15 months old, we always knew his condition was life limiting, but it’s not something you think about and it’s not something we were prepared for.
He passed away at Alder Hey and within hours Shelagh and Sharon from the Claire House Butterfly Team were there to support us.
They wrapped him in a blanket and Ange cradled him in the car during the journey to the Claire House Butterfly Suite.
It was so special to have that extra time with Jude. We could be there 24 hours a day with music playing and his teddy’s all around him. It was so lovely.
Before Jude passed away, we knew the Butterfly Suite was there but we never really knew what is was. It wasn’t until the time came that we realised how special it is.
It was perfect to have privacy in a lovely tranquil setting. We could have our family visit and we could sit out in the garden.
The Butterfly Team couldn’t have done enough for us and all of the hospice staff were so friendly and compassionate. They took away the worry of having to think or organise anything, we could just spend time with Jude knowing everything was taken care of.
Claire House was our sanctuary, our happy place, without them there would have been a void.
They gave us so much to look forward to and so many treasured memories.
The things that seemed small at the time are now so significant. His hands and footprints take center place on the fridge and it’s so nice to look at them every day. Without Claire House we wouldn’t have that.
Even now they check in with us to see how we are doing. It’s so nice to know that they still think of us.