The following is an excerpt from Claire Audibert's book The Letter E - a powerful story of hope, love, and family resilience.
Claire’s memoir chronicles her family’s journey of parenting a child with special needs; from his birth and the frightening first months of parenting a child with an undiagnosed condition through to diagnosis, and then learning to live with and embrace the hand they’d been dealt.
Claire is passionate about diversity and inclusion, and raising awareness for KCNQ2 to help shed light on the rare disease and how it can affect families.
We arrive at the NICU for the 7am feed. I'm starting to get more confident with the breast pump, so I express next to Elliot in the big room, rather than in the privacy of the expressing room.
The doctors do their rounds at around 8am and discuss Eliott's progress and provide us with any updates; they also answer a few of our questions.
Shortly after, Ced leaves for work. He's lucky to have two weeks of paid parental leave, but we made the decision that he wouldn't use them just yet.
The idea was to spend time with Eliott together as we settled into our new life as a family. But with Eliott in the NICU, Ced's going back to work to save his leave.
Eliott has yet another EEG in the morning and has a seizure while they're doing it. It's hard to watch his body stiffen again. My heart sinks.
However, the EEG operator points out that having a seizure recorded will help the doctor assess what is happening to Eliott, and I guess that’s right.
While you're here, watch this video to help kids understand and recognise seizures. Post continues after video.
Ced returns after lunch, just before Henry and his team arrive. We’re sitting next to Eliott, as per usual, watching over him in his bassinet as he sleeps.