The girls recently started transitioning to daycare, with today being their official first day. It’s been going well thanks to our amazing nanny who stays with them and is so great with the girls, and especially Ella.
The girls’ school is not yet accessible and I don’t think there’s ever been a child with different physical needs and abilities who has attended there, so we’ve been trying to adapt things for Ella as needed including bringing in equipment she can use. The staff have been great about adapting to her needs, but here’s the thing; I just want her to be her. I don’t want Ella to be a warrior princess paving the way for kids before her – I just want her to be 18 months old and learning through play and making friends and being adorable.
I know it’s a silly sentiment to have; but it’s 2015 and I don’t think she should have to adapt for the world, I think this world should already be ready for her. I get enraged when there’s no accessible entrance somewhere or when people just don’t get that she can’t sit in a high chair. I see the looks we get when she’s in her GoTo seat in the grocery cart or at a restaurant; but why aren’t there options for her? Why do I have to bring a special seat for her everywhere? Why does my 18 month old baby have to remind people of differences?
I want Ella to do the things kids do, and most kids under 2 don’t have to worry about being different or needing a special chair or showing people how to hold them. I know that in advocating for Ella I’m advocating for every child that comes after her, that we’re making it easier for them, helping them, but there’s still a big part of me that just wants it to be easier for her, for someone else to have paved the way for her.
People ask me about equipment for her or when she’ll get AFOs or when she’ll sit or stand on her own. I want them to be asking if she has any new words or to comment on her big blue eyes or mouth full of teeth.
I know it will get easier and I have this fantasy that Ella will become a neonatologist and will work with the tiniest babies and will tell families her story and by then the world should be more accessible, should be ready for those babies.
I just wish it had been ready for her.
When my son needed a feeding tube at 3 months old he was the first kid in the family to have ever had one. Some of his own extended family members were terrified to hold him because they didn’t know how to handle the tube hanging out of his nose. It’s better because he now has a button that’s mostly flush with his body, but that’s not really the point.
I would’ve also loved if my family was ready for my son. If they knew that asking over and over when the feeding tube was going away isn’t helpful. If they accepted his health issues instead of refusing to believe there’s anything wrong with him. As time goes on our journey gets easier because his issues aren’t obvious to strangers. I hope it’s the same for your daughter. Maybe as the community adjusts people will be ready for her and there won’t be a need to ask for the things she has to have to function.
I hope things get easier sooner rather than later. ❤