Four months ago, we were offered respite for our 18 month old daughter Alice. At the time we had very mixed feelings about whether or not to avail of it.
Alice has rarely slept a full night because of her condition which meant we were absolutely exhausted. With two other kids, their busy lives and routines – I found it so hard to juggle everything.
One of our main concerns was “What if she didn’t settle and the staff didn’t know her little ways and habits therefore making her more upset and stressed“. We had heard that all the staff were trained to deal with kids with similar needs to Alice but in my heart I felt that they didn’t know her like us. She didn’t know them and maybe they wouldn’t have the time to just cuddle her.
The second thing that really bothered us was that we felt very guilty. We felt like we were, in some way, abandoning her. We wondered how on earth we could even consider going away for a holiday, even for a couple of nights, without her.
Spending quality time with her five year old sister and doing things with her such as going to the cinema can be impossible when you have a disabled child. Finding a babysitter was just as difficult due to Alice’s illness. Some people quite openly admitted to us that they were actually afraid to mind her in case something happened such as a seizure while in their care.
We eventually decided to give the Children’s Sunshine Home (now LauraLynn) a go and see how Alice got on. I will never forget dropping her up that day. She was scheduled to stay for two nights.
To say that the weekend was one of the worst in my life is an understatement. I spent the entire weekend crying. On the second night when I phoned to see how she was getting on,
I could hear her crying in the background. I decided there and then I was going to collect her. Thank goodness I got talking to a wonderful nurse called Erina, she talked me through all the benefits of Alice staying.
She pointed out how in the long run we would all benefit.
Her sister would get to spend quality time with us and do things that are normal to most five year olds. She explained how we would all eventually get used to it and settle into a routine and we would definitely benefit all round just by getting some well-deserved sleep.
I listened to Erina and will be forever grateful to her because that very same night another nurse noticed that Alice was apparently showing signs of seizure activity which were so subtle that we hadn’t noticed anything out of the ordinary. She advised us to get it checked out, within one week of the observation Alice had an E.E.G. and is on seizure medication ever since.
We have all got used to Alice going on her little holiday now so much. If we didn’t have Sunshine Home to help us and give us a break we would be lost.
The team of nurses and carers are fantastic. I can’t praise them enough and Alice is happy to be left. Her sister got to have a sun holiday with us for a full week and got to do all the things that little girls enjoy such as Aqua Parks etc.
We had taken Alice on holidays before and it’s always ended in disaster. On our last holiday Alice ended up in hospital for three days with breathing difficulties.
Ann Booth showed me around the new LauraLynn House where Alice and other kids will be moving to. I was so impressed with LauraLynn House and the facilities to cater for families, whereby parents can choose to stay overnight to help settle their child in. It means that you can be on hand to show the nursing staff your child’s daily and night time routine and that in itself gives you great peace of mind.
If you are blessed enough like us to be offered some respite I strongly recommend that you grab it with both hands. Respite nowadays, as we all know is very hard to come by, and in some cases non-existent. From our experience I cannot praise them nor thank them enough.
They are a superb bunch of people that have the necessary experience and love to maintain a home-away-from-home.
Roisin, Alice’s Mum