THIS world wasn’t built for Keeva — she was born into a world that she doesn’t fit into.
These were the heartbreaking words of Lisa Walsh, mum to Keeva, as she talked about some of the challenges her daughter has faced.
Keeva, from Glenville, is 11 years old and has Achondroplasia — the most common form of dwarfism. She was born ten weeks premature and on that day, her family’s world turned upside down.
“She was in neonatal for ten days and the consultant told us to just go home and enjoy our baby,” said Lisa.
“We Googled it, even though we were told not to. We were in denial — the amount of denial we were in was off the wall. My husband Paul was really upset, but for me, mum mode set in, I was thinking it wasn’t true, that he had to be wrong.”
Lisa said that they were told to prepare for the worst case scenario.
“The first year of her life was the worst year,” Lisa said, as she explained that they were at medical appointments every week, then every second week and every month.
Keeva has two older brothers, who are now 17 and 14 and at the time, Lisa and Paul had three babies under the age of three.
As a way of coping with what they were all going through, Lisa started to journal everything — from Keeva’s height, to medications, doctor’s names, and notes from appointments.
During the first lockdown, she was sorting through some things and one of the journals from the early days fell out of the wardrobe. Lisa said it felt like a sign and the idea of the ‘Dear Diagnosis’ journal came to her.
The concept is that you use Lisa’s journal to keep track of appointments, important information and notes and also write to the diagnosis.
"I had never heard about anyone talking to their diagnosis,” she said.
Lisa explained that as well as having a central place for notes and important information, the journal also allows patients or their family members to rant and give out about and directly to the diagnosis. Things like ‘Dear Diagnosis, you’ve made today really tough’ or ‘Dear Diagnosis, thanks, you gave me a bit of a welcome break today’ would be the kind of things Lisa hears about people writing.
“Even the word ‘diagnosis’ is a hard one to digest. I found when we were going through Keeva’s journey with her, especially at the start, that it was really beneficial to get some thoughts out of my head and onto a piece of paper.
“We have never hidden Keeva’s diagnosis from her, she will be 12 in July and we’ve always told her what she has and that she has it from birth and we encourage her to find her ability in the disability.”
Keeva loves swimming, dancing and singing and her mother described her as a “real girly girl”.
Two years ago, Keeva and her parents decided that limb lengthening was something they could do to give Keeva more options in life and she underwent surgery on her legs. For the first time, she now fits into trousers meant for her age group.
They hope to get the lengthening surgery on her arms soon too and she will be able to avail of a final surgery before she turns 20 — with the hopes that she could reach a height of 4ft 10in or ft.
“It’s not about fitting in, that’s not why we did the surgery. It’s about giving her the ability to do things like reach a light switch, open a door herself and reach things in the world,” Lisa said.
The ‘Dear Diagnosis’ journal can be purchased on www.deardiagnosis.ie for €20.