One would think that a family with four children makes for a busy, fast-paced life and that is partly true for the Robinson family. Life with Aodhan (12), Taiya (8), and twins Jayde and Skyla (4) is indeed busy but parents Alex and Desiree have had to learn to adapt to a slower pace. That’s because Jayde and Skyla live with complex care needs.
“Everything revolves around their schedules and their needs,” Desiree explains, adding that having two children who require complex care and who get around in wheelchairs just means that things take longer to do. “So you just have to take life one step at a time and you learn to see the good in things.”
Jayde and Skyla are identical in nearly every way. Both have beautiful dark eyes and curly dark hair. You can tell them apart because Skyla has a freckle on her cheek. They are very social and love interacting with others, especially other children. Their challenges are also nearly identical: both have spastic quadriplegia, are mostly tube fed, and are non-verbal – although they do say some words, including “mom.”
Desiree says that having children with special needs has been a good learning experience for Aodhan and Taiya.
“Aodhan is so good with them. He takes so much time with them, playing and making them smile,” she says. “He really makes them happy.”
Taiya is also learning that her family’s “normal” is not the same as that of other families. While she sometimes mourns the fact that her sisters will not be able to walk with her, she already has a good comfort level with children who have disabilities.
“She is not at all shy about interacting with other children who have special needs,” Desiree says. “There are lots of good life lessons here. We know that we can’t take anything for granted.”
Still, having children with complex needs means that the Robinson family cannot always do what other families do. So when Jayde and Skyla celebrated their 4th birthday and were now old enough to visit Matthew’s House, Desiree and Alex decided to take advantage of this community resource.
Matthew’s House supports families by providing quality respite care in a beautiful home-like environment for children with complex care needs. The home is named for Matthew, the son of Doug and Andrea Froese, who chose to honour Matthew’s legacy by creating a safe and loving place for children just like Jayde and Skyla . They dreamt of a place where children could come and be cared for so that their parents – and siblings – could get the rest they need. Because Matthew’s House has experienced staff and is fully equipped to care for children with complex needs, Desiree and Alex knew that Jayde and Skyla would be in good hands.
“Matthew’s House is amazing,” Desiree says. “They give really great one-on-one care.”
As Jayde and Skyla enjoyed their own personal retreat, Alex and Desiree took Aodhan and Taiya to the waterslides, an activity they’d never be able to do with the twins.
“We also got a full night’s sleep,” she says.
Desiree appreciates that Matthew’s House has so much to offer children, including a wheelchair-accessible outdoor playground and toys and activities specifically designed for children with high needs. It’s important to her that Jayde and Skyla also have something to look forward to. She anticipates future visits that are longer, allowing her and Alex to do bigger activities with their other children, like going camping.
The services provided at Matthew’s House are open to families from across BC but Desiree is grateful that this respite home is right in her own community. She is grateful to the Froese family for their vision.
It’s incredible what the Froese family has done. I’m so glad they made Matthew’s House possible. Desiree, mom to Jayde and Skyla
It costs nearly a million dollars annually to keep Matthew’s House open, which is funded through a partnership with government and private donors. The majority of Matthew’s House revenue comes from events and generous donations from community groups and individual donors. Desiree hopes that those who give to Matthew’s House realize how much their gifts mean to families like hers.
“Matthew’s House is awesome,” she says. “We really need it.”