Sometimes travelling close to home can still be an adventure. BJ had his first overnight stay in respite this weekend and although only 40 minutes from home, it was a test for all of us. Taking the first step was difficult for me.
You may be wondering why we haven’t used respite before. Part of the reason is the name “respite.” To me, and this is just my feelings on the matter, it conjures up a necessity to alleviate myself of something difficult and rightly or wrongly, I saw that as a negative. Although our life is full-on with BJ, I just don’t like the term.
When BJ was younger I kept putting off sending him to respite thinking, “when we get his sleep sorted” that will be when we will give respite a go. Many years later the sleep is not sorted and it has really given us more reason to seek out some help to get a good night ourselves.
BJ does weekend and school holiday outings with a Cerebral Palsy Alliance respite service and we love the carers who all know him so well, but an overnight stay was the final frontier. One I was loathe to cross.
But we have done it and I am relieved for all concerned we have. I think it became a bigger obstacle because we left it so late to give it a go. I wish we had done it earlier but everything is so much clearer in hindsight.
So, on Saturday morning we packed BJ’s bags and delivered him with everything we felt may help smooth the way for him. I had felt anxious in the week leading up to it. A two hour meeting with the Cerebral Palsy Alliance was completed where we shared BJ’s medical history, routine and we found out how medication had to be supplied. We have never had to webster pack medicine before.
Driving to the respite house I kept thinking of things I should have packed or information I should have shared in the meeting. Hubby kept saying, “Relax”. Never have words been more irritating, no matter how well meaning.
We dropped BJ off and Hubby, AJ and I headed out for a day at the beach. I decided we should do something we wouldn’t normally do with BJ so we took the ferry from Palm Beach to Patonga (unfortunately the ferry isn’t wheelchair accessible.) It was a glorious sunny day and the views of the untouched bushland, other boats on the water and a smiling AJ finally had me relaxed.
We lingered over a long lunch at the Patonga Hotel (BJ hates lengthy lunches) played hang man and the dot box game on our serviettes and generally enjoyed the different pace. (If you are driving to the Central Coast the Patonga Hotel is wheelchair accessible, has water views and delicious pub-style meals. I can highly recommend it for lunch)
Wandering along the beach hand in hand with Hubby was lovely and AJ was full of chatter. It was a fabulous day and I was confident BJ was having a good time with friends and staff.
Driving home I got a little anxious again and made a call to the house. All was going well but I was keen to know when BJ was settled and asleep. A message was promised. The staff were very reassuring which was very much appreciated.
It was strange arriving home without BJ. I had nothing I absolutely had to do. AJ ate her own dinner and of course needs no assistance, so I felt lost for a while. I have to admit it didn’t take me long to sink into the couch and not move. I received a text message to say BJ was asleep and seemed at ease with someone else getting him off to bed so I could rest easy for the night.
Being in the habit of never knowing what time I will have to get up to BJ, I went to bed early. I had a blissful night’s sleep and didn’t wake until it was actually light. I woke at one stage in the night wondering if BJ was sleeping or up watching tv but there was little I could do.
I was elated to receive a message this morning saying BJ had slept ‘till 5am.
It took me a long time to come to terms with sending BJ to respite but I think it is an important skill for BJ too. He needs to get used to others taking care of some of his needs for the future. From all reports he found going to respite easier than I found sending him. A great sign of independence and confidence.
We had a lovely relaxed weekend. BJ’s need to be on the go has its positives as you see from our usual weekends and travels, BUT it was definitely nice to have a slower pace for one weekend.
If you haven’t taken the step towards seeking respite, I suggest you take small steps. Day visits and holiday care is a great way to gain confidence and for staff to get to know your child. Overnight stays can follow when everyone is comfortable with it. It certainly took me a long time but I think it is important for all the family.
In the meantime, maybe someone can come up with a different name for respite.
If you liked this story then why not subscribe to receive emails alerting you to new posts. If you are not part of our facebook community then why not join us now.