I’ve been meaning to write a post for ages about all the things that have been going really good for Elsie and our family lately, BUT I’m finding that it’s much easier for me to write when they’re not. I’m actually developing a reputation at work for being someone who talks about all the reasons not to have kids because nine times out of ten I’m complaining about them. Apparently, I’m just not the type of mom that gushes to people about how great her kids are. However, I absolutely am the type to let everyone know how ridiculous they are.
The scary things though? The sad things? Those are still things that I mostly keep hidden, much like everyone else does. To me, parenting is one of the scariest things you could ever do. Parenting a child with a rare disease or special needs? Even scarier.
There’s this person that you love, and they’re yours, and they need you. And you try to be brave but you see them fighting all the time. Taking their medicine day in and day out. Seeing their doctors, getting their tests. And still at night you wonder if you’re doing enough.
Will they be okay in one months time? One year? Ten?
Should you have pushed harder for that new medical aide or tried that new therapy? Should you be taking them to see specialists far out of town? When things are going well, usually it’s easy to not think about it. Mostly, they’re just a kid like any other. Except for their disease.
Sometimes I feel like I’ve never really dealt with it. That I’m mostly just ignoring the bad or turning a blind eye. I see it and it’s there but I choose to focus on what’s good instead. But is that really best?
Someone once told me that until I make peace with cystinosis, Elsie will always feel that animosity. Her child brain thinking it’s directed towards something wrong with her, but how can I ever be okay with it? Yes it’s a part of her, but it hurts her. She’s mine to protect but I can’t always with this and how am I supposed to accept that? There’s positives, don’t get me wrong. I’ve written more than a few posts about that. But in the end I think it always comes down to my fears. Of the future. Of the unknown.
Of all the unpredictable things that could happen to her and sometimes, like now, I can’t just ignore them. I can’t hope for the best when something gets posted to social media like the struggles of another family. Maybe another child or adult with cystinosis. How am I supposed to believe that everything will be okay when reality stares at me through the glass of my phone? What do I do then?
Mostly, I cry. First to Dave and then, when I’ve calmed, I sneak into Elsie’s room and lie with her. Wrap my arm around her and silently well with tears while I wish so badly for everything to work out. I still worry about the future and if we’re doing enough in the here and now, but she’s warm in my arms and tucked safely beneath my chin and tonight that’s enough. With her heart beating beneath my hand and her breath whistling out her nose. Beside her, I let my love grow and expand. Let it pour out of me in the hopes that she feels it and she knows how much I care. Then I pad back to bed., flip the pillow damp side down and drift asleep as my tired mind lets go of it all for a brief moment in time.
In the morning we’ll start again. I’ll see how she fights but instead of being sad or feeling defeated, I’ll be awed. I’ll drop her off at school and watch her put away her things and leave her there feeling like any other parent…
Relieved that her and her 7-year-old hijinks will be someone else’s problem for the next 6 hours ;p
(And maybe also excited and proud and all those other wonderful things that bragging parents think too)
Elsinosis: Living with Cystinosis 