There have been many reminders of disability lately. Surgery plans, wheelchair fittings and too many phone calls to mention. An MRI is looming in the distance that could start treatments that we don’t feel quite ready for. None of this is unusual or out of the norm for us, but it seems to come at a pace that is uncomfortable. There are signs that a season is coming that will once again test us. I know I’m not alone in this, many parents walk difficult seasons for a while or a long while. In many ways my path was chosen, but it still doesn’t mean I don’t have a longing for the ordinary. It’s not a longing for the life I used to have, but for life to just be mundane and predictable. Ordinary.
Eve was having a rough day today. I started my investigation to figure out what was wrong. Her stomach? Seizures? Does she needs her medications adjusted? In my usual way I tried to solve this non-verbal mystery by observing her body language and attempts to communicate. You would think after all these years I would just know. But I don’t. I got her out of the wheelchair and we sat on the floor. She crawled over to her toys and got one of her favorites and big belly laughs ensued. My diagnosis: she was bored and wanted to play.
Why is it that my mind goes to various medical scenarios but never to something ordinary? I think of seizures before I think of giving her a toy to play with? She is a child that can have tantrums just as any other child, but I take it a step further to make sure we aren’t heading into a crisis situation. This is a perfect example of how special needs parents are always “on”, always alert and always ready to react to whatever comes our way. There is a base level of stress that becomes our new normal and hard to recognize after months and years of it.
Maybe the ordinary isn’t possible, at least in this season. Managing stress and expectations is. Making sure that the journey we are on isn’t traveled alone and finding strength in the courageous children we are parenting. There are aspects of the unpredictable that we can control and there may even be some days that will feel normal. Even ordinary.