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Finding the missing piece

April 18th, 2016  | Family Stories

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For 7 years, Keira Chilvers had no idea other families were going through what she was with her son Zane.

Zane, who is now 12, suffered HIE at birth. After a rough start in the NICU, he was sent home and several diagnoses came in the years after, including epilepsy, cortical vision impairment, diplegia cerebral palsy, microcephaly, scoliosis and thermo regulatory dysfunction. But he is also a happy, clever kid with a great sense of humor, his mother said.

The Australian mom, she had no idea there were other families like hers until she stumbled across one on the internet, she said.

“I felt like I was reading our story, I can still remember how I felt. I was devastated another family was living our nightmare, but I was relieved and then sad to know we weren’t alone in the journey, too,” Keira said.

Then, she found Hope for HIE, and was able to connect with parents worldwide.

“I had done 7 years of not fitting into one diagnosis box and I so desperately wanted somebody who had a child like mine so I could bounce questions off them,” she said.

“Coming across the page was the missing piece I think I needed in the grieving process that all parents have when you have a child who has suffered a brain injury.”

Now, she has that connection she was seeking. She celebrates achievements, which many families call inchstones, and mourns losses. She can empathize with families who are struggling with seizures, as Zane has, and offer her support.

When they are struggling with equipment, funding, illness or the seizure monster, we are all in the same boat. We want to share our experiences and knowledge to save them the struggles we have had over the years,” Keira said.

Her advice to other families is to find support, and get answers, but also allow yourself to be human.

“It’s ok if you didn’t do therapy today and sat cuddling instead,” she said.

“It’s so easy to lose who you are as an individual when you’re caring for your child. Keep a hobby or set time for yourself and you and your partner to do what makes you happy.”