A daughter's smile is all it takes
CHRISTINE Priestly's days mostly start at 5.30am and end when she falls into bed exhausted after meeting the needs of her daughter Adele.
The two-year-old has cerebral palsy and needs constant supervision, extensive attention and frequent trips to doctors and specialists.
But Christine isn't complaining; far from it in fact.
"A smile is enough for me," Christine said, sitting in the lounge room of her Bellbird Park home.
"Even if Adele is having a bad day, if I can get her to giggle, I think to myself - I can do this; with that smile, I can do this.
"The reason it doesn't get me down is that I find with typical children, a lot of their milestones you overlook but with Adele, you celebrate them because they are far and few between.
"Some people might say, 'She can't do this' but we're, 'But she can do this'."
Formally speaking, Adele has only reached childhood targets equivalent to a four month-old but Christine's eyes sparkle and her girlish laugh erupts as she talks about her daughter's milestones that really matter.
"She loves giving high fives, she loves blowing kisses; the things she can do we get to emphasise them rather than over-looking them. It makes it just that much more special," she said.
"Also, you don't just take her achievements for granted; you don't take life for granted. I don't just take each day and let it meld into the next. I kind of see each day as a new adventure."
She said she didn't see herself as special, just someone who appreciates life a lot more since Adele came along.
But Cerebral Palsy League CEO Angela Tillmanns said that day in, day out, carers like Christine put the needs of someone else before their own.
She and her husband Damian already had a son Tylor, now four, and had another girl, called Storm, who was born six months ago.
"Before, when I was working full-time I was like, 'When are you going to daycare?'" she said.
"Now I appreciate having my kids home with me. I suppose nearly losing Adele it's made me appreciate my kids so much more and not go, 'How many hours is it till bedtime?' or something like that.
"I've got two diplomas and I was hoping to return to work when Adele was one but not after the diagnosis and not a lot of daycare centres will accept her because she needs a one-on-one carer.
"Plus I don't think a lot of places would understand between three and five days a week with appointments and other sessions."
Christine's days begin ordinarily enough with changing Storm's nappy and getting herself dressed.
But from there on, the day is focussed almost solely on Adele.
After changing Adele's nappy, Christine dresses her in a special suit called a Dynamic Movement Orthosis - a skin-like Lycra suit that helps to strengthen her muscles.
Then it's time to prepare breakfast. Adele can't eat solid food, so Christine makes up mushy food mixes and a special formula to help Adele with weight gain. Then there's the veritable cocktail of medication.
Most weekdays she ferries her children around to Adele's appointments, ranging from physio and speech therapy to hearing assistance.
While the physio and speech appointments are at the Cerebral Palsy League' Ipswich office, Christine must drive the family to South Brisbane for specialist appointments at the Mater Hospital and to the Yeerongpilly School for the Deaf for the individual hearing support.
After the appointments, Christine shops for groceries, which means pushing the girls in a specially adapted double pram engineered to be more like a wheelchair while simultaneously pulling the shopping trolley behind her with Tylor strapped into the baby seat.
Christine said on numerous occasions people have said: 'I don't know how you do it' but none of them backed that up with an offer to help.
By the time they get home it's time to get a load of washing on, cook dinner, bath the kids, feed her family and clean up.
Not surprisingly, she literally falls into bed at the end of each day.
Christine repeats this day over and over every single day. As Adele's primary carer, she provides 24-hour, seven-day-a-week care with the exception of just four hours of respite every Monday.
Her husband Damian works six days a week so she likes to give him the day off on Sunday.
"Damian works six days a week and on the seventh I just let him rest," she said.
"At night, I might say, 'The other two are asleep; you watch one of the other children while I go and have a bath for half an hour and relax'.
"But that's the extent of it. I don't go, 'You've got the kids for Saturday night, I'm going out with my girlfriends'.
Asked if she misses being able to do that, she said she missed even being invited out. It's the only time her smile fades.
"Since having Adele - and especially since her diagnosis - a lot of friends that I had before her and have only typical - non-disability - children don't contact you any more," she said.
But the good mood soon returns as she confesses she probably wouldn't be able to take up any offers anyway.
"I'm quite protective of Adele. The only time I've left her was to go and have Storm," she said, breaking out laughing.
"Oh, and once when Damian and I went to a wedding. So once in two years.
"I think I checked on her six times. And that was just from 12 o'clock when we got there until 6pm when I knew she went to bed."
Christine counts the four hours of respite each Monday as a blessing, even though she still has to care for Tylor and Storm.
"I intentionally asked for respite on a Monday because Tylor is home from kindy. This way I can spend time doing normal kids' activities with him and his sister and they can do things they can't do when we're focussing on Adele, like going to play group," she said.
Christine says she is fortunate that Tylor, a real personality, is her very own carer's assistant.
"Without having to ask, if I'm doing dishes or something and the girls start crying, he will sing to them or play with them with toys until I'm done. Their bond is amazing," she said.