“Are you sure you want to do this?” I asked a number of times. After describing the routine of looking after my son overnight, I gave her one last opportunity to back out.
But our former babysitter and incredibly generous friend didn’t accept my offer. She just smiled. She had volunteered to stay with Deane overnight because she wanted to give my husband and I a night together outside the confines of a hospital. It was the first such occasion in almost four weeks.
Although we struggled to figure out what to do with such unusual freedom, we had no doubts that Deane would not miss us.
Finding a caregiver for a disabled child is a huge challenge, but when you find someone it is like striking gold. I was absolutely confident that Deane would be enjoying himself because he was with someone who knows his likes and dislikes, what he finds funny and how to get him laughing in just about any situation.
Officially the government and funding agencies call them respite workers. They may have any number of different professional qualifications or none at all. The most important thing from a parent’s perspective is that they provide a breath of fresh air when you’re at the end of your rope from doing the same mundane things over and over again.
We are lucky enough to have a number of people who have these abilities. Through my sleep-deprived haze of the past few weeks, I marveled at their ability to come in to the hospital room with a smile, go directly to Deane’s side and engage him. They boosted my spirits immediately.
A couple of these people could stay overnight with Deane as competently as his parents. People have suggested we put them into a regular rotation of hospital stays. But that might risk the most important quality they have: that room-brightening energy is dependent on regular sleep.
After last night I realize I need to thank all of those who have brought us their abundant energy! Without it I wouldn’t have made it this far.