Preemie Twins On Journey Towards Independence, Lansdowne Support
“If kids don't come with a manual, for kids with special needs, it's even more so,”
said mom Tara Chisholm. She and her husband, Andrew Chisholm, have two sets of twins: Alex and Aeva, 18, and Eli and Trent, 11.
The elder twins were born 15 weeks early. “They were quite sick,” Tara said. “Aeva was particularly affected, and is still dealing with the aftermath today.”
Aeva has Cerebral Palsy, an intellectual disability, epilepsy, and a ventriculoperitoneal shunt, which allows cerebral spinal fluid to leave her head and be reabsorbed in a space in her abdomen, so that pressure doesn’t build up inside her skull. Initially, she also had a tracheostomy tube and a G-tube for feeding.
Doctors told the Chisholms that Aeva was medically fragile, and that she would never be able to walk, talk, or even eat by mouth.
After being released from hospital, both twins were referred to Lansdowne Children’s Centre (LCC) for the Infant Child Development Program, physiotherapy, occupational therapy, speech and language, respite services, therapeutic recreation, etc.
Throughout the first six years of her life, Aeva experienced a number of medical emergencies.
“We saw her turn blue from lack of oxygen. We saw her have seizures that lasted for an hour, then she would be unconscious the rest of the day. We saw her in a medically induced coma. We saw her projectile vomit due to shunt problems causing pressure in her head. She saw the inside of the operating room far more than any child should have to. Thankfully, she doesn’t remember much of this time in her life, but we as parents will never forget,” Tara said.
“Developmental milestones were almost an afterthought during this time.
Reaching "unlikely" milestones in their journey
"We worked very closely with the therapists at Lansdowne, and they were all so supportive,”
she said. “They taught me how to manage Aeva’s stretches and exercises, but also gave me a few minutes of social time as well. They were so good at making therapy fun, that we didn’t even realize we were working really hard!”
Mom: ‘(Lansdowne staff) were so good at making therapy fun, that we didn’t even realize we were working really hard!’
Tara said she and her husband are grateful for the tireless support from Lansdowne staff – for Aeva, and for them, too.
“They taught us how to manage all her care, and still be parents to her, not just always doing the work but how to have fun too.
"They normalized disability for us, and were patient when we needed more time.”
It's been a difficult road at times, but Aeva has come a long way on her journey.
“Through therapies at Lansdowne, she does what she does today, which is whatever she wants,”
Tara said with a smile.
That includes walking, talking and eating – despite the doctors’ initial prognosis – as well as regularly spending weekends away with friends at Kids Country Inn,
The impact of Lansdowne support, programs
Lansdowne’s respite program, and being involved with the Therapeutic Recreation program (she was recently a performer at the Therapeutic Recreation Arts Gala as a member of the Lansdowne Lights Drama Club and the LCC Dance Crew).
Some of Aeva’s progress would have been hampered, if not for the people who care about her having her back – particularly her parents and Lansdowne staff.
“Our LCC team has popped by the hospital when Aeva was admitted, they have attended medical appointments with us, they have come to so many school meetings. So. Many. School. Meetings. They have taught us how to be the advocate our daughter needs,” Tara said.
Depending on things like her mood and fatigue levels, Aeva might need to use a walker or wheelchair, and these needs haven’t always accommodated like they’re supposed to be.
“There's so much stigma attached to disability and equipment for it. Lansdowne is very helpful at showing us that it’s just something she needs to become independent,”
Tara said.
“We look forward to watching her reach for the sky, surrounded by her family and LCC community.”
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