We’re…well in many ways some people would say we’re almost at the end of our diagnostic journey after three years of being a SWAN family (Syndrome Without A Name). But in so many ways we’re only at the start of everything and I’m still shocked. Still taking it in. Still trying to come to terms with something that I’d desperately tried to convince myself was just a slow start. She’ll catch up in her own time. I’ve said those words so many times to so many people. And yes whilst they are still true, the fact is she has a genetic condition that will be with her for her whole life. So whilst I can say she might catch up slowly to her peers, or she might not (okay if I’m truthful with myself probably not but I want to aim high, I want it to be easy for her), she IS different.
Since her birth she has been my special little Princess. My bean child. She looked different from the first, almost fae like, her features delicate and unusual. All parents think their child looks special, but bean child did. Nurses commented on it. And as she has grown into the ‘big girl’ three year old she is today, she has had to fight that much harder for every little achievement. Things other people took for granted we couldn’t. Didn’t.
Feeding has been a particularly hard battle from the NGT (Nasal-gastic tube) that fed her to the bottle feeding (only her Daddy or I could feed her) to weaning (another long and painful struggle), even now feeding is still difficult. A daily battle.
Gross motor skills are another area. We waited months for her to crawl, months of watching her after her peers were both crawling then marching across the room, to those first tentative steps again months after other children her age. Even now when I watch her at her ballet class with her one to one helper at her side I’m that much prouder because she battles hard for every little movement, practises over and over at home for something others can do without thinking about it.
And then there is speech. The most noticeable to strangers after her unusual behaviour, her speech is delayed. Hardly understandable by many, I understand her better than most. And she tries so hard to be understood. Yes my bean child is a fighter. Nothing comes easily to her, we work for every little tiny step and we celebrate them all.
So perhaps the genetic disorder wasn’t a total surprise but still when they say the words another piece of my heart breaks for her all over again. Because I want it to be easy and it isn’t. And it won’t be easy. Every step will be a hard won fight for my little bean child. And I know she won’t back down.