By Adele Kirkby-Clark
I remember the first time I heard the word “respite”. It was from one of my son’s doctors; he spoke about the support I would need moving forward and how I would need respite.
At the time I said to him “I don’t need respite, I am fine.”
The magic words, “I am fine.”
At the time I was fine, I don’t think I needed respite any more than any other mother of a young baby did. But as the years went on, and those other mum’s children became less dependent on them, my son became more dependent on me and more complex in his care needs.
Not that I am discounting that all mothers work incredibly hard and need a break also. But I came to understand that for mum’s like me, getting a break is harder. It’s a lot to ask of friends or grandparents to administer seventeen medications, learn how to suction, manage seizure and dystonia rescue plans, endless vomit, tube feed, adapt to a house full of equipment, and physically transfer my son between the equipment. This is while also asking that they do all this without sleeping very much as they keep my beautiful little man with his sleep disorder company overnight.
When I see these words written on paper, I also know that it is unreasonable for me to maintain the belief that I don’t need respite. But recognising that I need respite and accepting respite are two completely different things. The latter took me much longer to act upon – almost four years in fact.
Coming to terms with the term respite was what took me so long. Respite is defined in the dictionary as, “A short period of rest or relief from something difficult or unpleasant.”
My beautiful little boy with whom I love with all my heart… “difficult” and “unpleasant” were just words that I didn’t believe he should ever be associated with. His life was difficult and often unpleasant for him, but it was my job as a mother to make sure I was there by his side to help him through the difficult times that came around daily.
But what if I were so tired that I could no longer be my best self to help support him through his never-ending battles and celebrate his successes? This is where I was when I got an unexpected phone call to offer us a three-night respite stay in a children’s hospice.
I hadn’t slept through the night in weeks and their question didn’t even require thought to answer. The answer was “Yes, yes please.”
Then came the next question, “Would you like to stay in the same apartment as him or would you like him to stay in his own room and you guys can stay downstairs?”
At first, I answered, “With him.”, and then I took a breath and thought about the goal, “Strong Me. Strong We” and retracted my first answer and said, “No, we are so tired, we need some sleep, can we please stay downstairs?”
In short, the stay was incredible. Everyone found happiness, relaxation, rest, a moment to breathe, and reset. The effects of the stay will carry over to give us more energy, patience, and resilience to continue with whatever life shall challenge us with next.
I have changed my definition of respite to; “A planned break to support the practice of taking an active role in protecting one’s well-being to assist in enhancing one’s energy, restoring health, and reducing stress.”
ReachAble is a page made by a mother of a child with special needs and complex medical needs for mothers. It’s a place of positivity and place to discover strategies to feed our minds souls and bodies. It’s a place full of ideas that helped her be strong for herself and her family. (Strong Me. Strong We) It’s a space that values the importance of putting on our oxygen masks first so that we can be there for our challenging and rewarding lives.