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Diagnosis as a babyOur Stories


By December 23, 2021June 28th, 2022No Comments
From day 1 to 15 months old. My girl Violet.
Born on the leap year 29th February, full term at 39 weeks, weighing 5lbs7oz. Severely to profoundly deaf. Now weighing… well, I have no idea, but she wears 6-9 months clothes.Back when we first got her diagnoses of CMV at 4 months old, I was very active on facebook groups but when Violet got to the point it was clear she was much more ‘normal’ than expected, I went quiet. But I still struggle. She’s never been affected by epilepsy since her first and only seizure. I’ve known for months she does not have cerebral palsy as initially predicted. I’ve known for months she’s nowhere near as delayed as we thought she would be and is generally only a couple months behind. Her weight, although very small, has always been consistent and never a cause for concern.
As a young baby she never smiled, now, she never stops. She’s healthy, clever, bubbly, active and, although not able to talk, she is loud!
But it’s been really hard. The hardest was in the beginning when everything was so unknown and I didn’t know if my child would understand the world or be able to play and walk. Then things didn’t get much easier. The appointments are draining. I’m sick of hospitals. I’m sick of dates. The journey we decided to take to have her implanted after she lost all her hearing took a year. Then it finally happened, she got her cochlear implants, and within a week suffered a rare complication where she swelled up like a balloon and bam, we were back in hospital and yet again my baby was suffering.
Now she’s doing amazing. In terms of response, I couldn’t ask for more. She turns when I call her name and every damn time it blows me away.
She’s not walking yet, but she’s close. She cruises everywhere. We haven’t been to physio in months and may be discharged mid-end of next month if she’s walking.
But it’s still hard. It just never ends.
Now we’re faced with a whole lot of speech therapy… mappings/tunings… home visits… and I feel like my efforts to do sign language are never good enough.
Sometimes, I just need to vent. I’m frustrated that I know I should feel so, so lucky she’s as healthy as she is, yet lately I’m always feeling sad that she’s almost 16 months and not walking, that I may not hear a first word for up to a year, that all her friends her age have been walking and talking for months, and that they are constantly referred to as toddlers whilst everyone still calls my girl a baby.
I’m so grateful. But some days it is still so hard.