Parenting a child with dwarfism presents a big test for Baie d'Urfe mom
Baie d'Urfe resident Brenda Williams-Cloetta has a small problem, and not even a month's worth of awareness isn't enough to answer all the questions she gets about her seven-year-old daughter's dwarfism.
Colleen Cloetta is a bright, vivacious child who can do everything any other child can do – except with a few more steps.
Last month was national dwarfism awareness month, but it doesn't appear as though too many people are actually aware of the realities faced by families whose children are affected by dwarfism – a catch-all expression that lumps together forms of achondroplasia, a genetic – not hereditary -- ailment that strikes without rhyme or reason, and Williams-Cloetta wants people to know there isn't anything wrong with her third of five children that a few extra steps can't take care of.
"I want people to know that there isn't anything with Colleen's brain. I want people to be clear that is doesn't affect her cognition in any way," and even though there is often a motor developmental delay associated with achondroplasia, Colleen has proven herself to be a remarkable athlete with excellent co-ordination.
In fact, her skating is so good that the now-seven-year-old plays hockey with the Lakeshore Hockey Association – she plays goalie – and has been outfitted with special equipment by Reebok. Lakeshore has also offered to get a special jersey for the youngster.
"We've been very lucky," she said, but she still gets questions about Colleen.
Does she go to a normal school? "Yes." Are there potential health complications for people with dwarfism? "Yes."
Williams –Cloetta said the family is also counting its blessings that they have yet to deal with any of those complications, which can include skeletal dysplasia, heart and circulation problems, and others such as sleep apnea, difficulty hearing or complete hearing loss, pressure on the spine in adulthood, bowleggedness, and weight gain in adulthood. Because dwarfism leaves those with the genetic mutation – doesn't that make Colleen sound like a member of the X-Men? – with shortened limbs and a regular-sized torso, weight gain in the midsection is a big problem. Also, for the record, the word 'midget' is a derogatory term, unless you are referring to the hockey or football age-grouping.
"It's like a racial slur," her mom explained. "You just don't use the word," she said, adding 'little person' is a perfectly acceptable descriptor.
Colleen's achondroplasia isn't something the family saw coming. There's no history of dwarfism on either side of the family, Williams-Cloetta said.
"I bought my first lotto ticket after she was born," she said. "It will be different if Colleen has kids. She might not pass it on to them," she said.
For now, Colleen's only limitation is the fact she has to take three steps for every one taken by a normal-sized child.
"Everything is more physically demanding on her," she said, adding that acceptance is the biggest key for her and other family members.
"You have to accept that as a parent, this is something that will not change. My goal is for her to do whatever she wants in life. That she's able to go for it," said her mother, adding that Colleen's go-for-it attitude inspires her parents and siblings on a regular basis.
"She's so inspirational. Knowing how hard it is for her to do certain things, it's like, 'wow,' and it puts a lot of things in perspective," she said.
Inspiration can sometimes come in small packages – and awareness can, too.