Living in the moment with Bree
By Louise Kinross
Meet Robin Koczerginski and Rachael Lefebvre and their children Shyla, 8 (hanging from bar), and Bree, 4 (in swing), in this new A Family Like Mine video! Bree has Trisomy 13, a rare genetic condition caused by an extra copy of chromosome 13.
Trisomy 13 was once described as “incompatible with life,” because children often died shortly after birth.
However, the American Academy of Pediatrics recently noted that "death in the neonatal period is not universal, particularly for infants who receive intensive medical and surgical care after birth."
Bree did spend over a month in the NICU and has had three surgeries. She needs oxygen and is fed by G-tube.
Bree loves to feel the sun on her face and to have her family sing to her. Not surprisingly, two of her favourite songs are Mr. Golden Sun and You Are My Sunshine. Bree has intellectual and physical disabilities and goes to school with a nurse.
Raising Bree means “living more in the moment, recognizing simple joys,” Rachael says. “Because that’s how she lives her life. When you get that perspective, it’s hard to put into words how much that changes you.”
The greatest challenge has been “parenting Bree in an ableist world… where there’s very explicit and implicit notions given to you that your child isn’t as valuable as a typical child... Our society values independence, right? You don't have the same value for caretaking, and so the things that give me a lot of meaning...”
If a clinician questions Bree’s quality of life, “you feel a lack of trust, quite honestly,” Rachael says. “You want to be able to trust the people that are there caring for your child.”
Robin says he struggled with the grief of knowing his daughter might die. Writing “has been a way to process some of those feelings,” he says. Connecting online with other families with children with Trisomy 13 has also been invaluable. It provided “a more real, full perspective” on what to expect, Robin says, and helped them feel more optimistic.
A Family Like Mine is a BLOOM video series about diverse families raising children with disabilities. Check out other videos in our playlist.
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