The alarm sounds at 7 a.m. and Christine begins another day, sometimes more tired than when she went to bed.
She makes breakfast and packs lunches for her three older children while her four-year-old daughter Tawnie sleeps in.
Once awake, Tawnie consumes Christine’s day.
For a tiny little girl, Tawnie has very big needs.
But first she hugs and kisses her siblings good bye, especially Chantel who is like a little mother to her disabled sister.
Tawnie’s condition is spastic quadrupedic cerebral palsy with seizure disorder and asthma.
She has no language development, no walking skills and is described as failing to thrive which is one reason she’s so small, although Christine said tiny is hereditary in her family.
Since birth, Tawnie has been a challenge, but one the whole family embraces, including Christine’s parents who spend part of the year on the same property in order to help out.
Christine’s first order of the day is Tawnie’s medications, then trying to get as much high-calorie food into her diminutive daughter.
Some of her medications are dissolved in fruit juice, some hidden in yogurt. But most meals require some kind of subterfuge or game to get the critical calories into her.
Some days she’ll play briefly by herself, Christine says she loves her baby dolls, but most days she clings to her mother, the one constant in her life.
Tawnie is in many ways a regular four-year-old, with frustrations, sadness, joy and pleasure, but her ability to communicate is severely limited.
Tawnie attends the Strong Start program at Ecole Baker usually three times a week and, with patience, accepts the attention and care of a one-on-one worker. She has also bonded, as best she can with the coordinator, for which Christine is very grateful.
But she describes her daughter as her “right arm”, always attached and totally dependent.
But it’s not the awake hours that Christine
finds the most frightening, it’s when Tawnie falls
asleep.
That’s when the seizures send the tiny tot into flailing convulsions, when Christine must take her daughter to the hospital for intervention.
“The ambulance and nurses know me well,” she said ruefully.
Tawnie has many needs that Christine isn’t able to provide, so she turns to agencies designed to assist caregivers and parents like her.
One of the agencies Christine has turned to is Variety The Children’s Charity who help with some of the travel expenses and occasionally with equipment costs.
Christine is often traveling with Tawnie but needs a travel attendant to help handle her daughter. With their close relationship, Chantel is the ideal person to help with her sister.
“The women on the other end of the phone at Variety are wonderful, even though I’ve never met them,” Christine said.
“I don’t have to explain everything, every time.
“Variety’s assistance has allowed for a second attendant when we travel long distances for her medical appointments.” This is critical with Tawnie’s seizures.
“I’m grateful for what they’re able to help with and I’m sure they’ll help with future needs.
“However, Tawnie is going to need a lot of help in the years to come and I imagine I’ll be knocking on many agency doors.”
The 45th annual Variety Show of Hearts Telethon is Feb. 12 – 13 on Global BC.
The telethon features 23 hours, beginning at 7 p.m., of concerts and performances by world renowned entertainers as well as moving and inspirational stories about children in B.C., like Tawnie, that have been helped by Variety.
To donate to Variety call 310-KIDS or visit www.variety.bc.ca.