Tyson was born 18 months ago with a very rare condition. Doctors shared with his mother, Christa, that he will never be able to see, hear, walk or talk. Imagine being told your child will never hear your voice. Imagine he will never hear the words: “I love you.”
The first six months of Tyson’s life were spent in acute care and rehab facilities as he required a ventilator to breathe and round-the-clock care. Many first-time parents experience anxiety when they bring their baby home. In Tyson’s case, his parents needed to plan how to provide for Tyson’s complex care needs without the security of a clinical setting. Christa and her husband knew they were going to need help.
Respite support for families like Tyson’s are a lifeline, but can be challenging to access for children with complex needs, particularly when they are technology-dependent. However, Safehaven didn’t hesitate and welcomed Tyson with open arms. During his respite sessions, Tyson receives one-on-one specialized care from Safehaven staff supporting his physiotherapy, making sure they are doing their part to help Tyson reach his milestones. These are milestones his parents were told he would never achieve.
Leaving the house as a family is a huge endeavour when factoring in Tyson’s life-supporting technology. His parents rarely leave the house at the same time. While Tyson is at Safehaven, Christa and her husband can take time to manage the millions of things that life throws at us – moving, car repairs, taking your spouse to the doctor or simply resting. “A lot of times, respite means you have a funeral to go to or an unexpected situation where you can’t physically take your child. You use those days so they have a safe place to go so you can take care of what you need or just take care of yourself.”
When asked what they would like to see for the future, Christa shared that increased respite days would be a life saver. As a result of changes to provincial supports, Tyson’s family context has shifted and they will only have five individual days at Safehaven this year.
As for Tyson, he is thriving. Despite his original diagnosis, he can see, hear and is starting to pull himself to a standing position. Full-on cruising is expected imminently. Tyson is an exceptional child and as Christa says,
“He’s our little miracle.”