It is hard to be the constant bearer of hard things. Hard to tell him about yet another appointment. Hard to tell him about another assessment. Hard to tell him about a new diagnosis. Hard to tell him about, perhaps, another intervention. Hard to tell him it’s an early pick up day, because a change in routine is hard. You do not look for more things, but you follow up. You do all you can now, in the hope of making life easier for him down the road. Nobody said parenting a child with cortical visual impairment (CVI) is easy. Nobody said it today.
It is hard being the constant bearer of hard things.
The one who attempts to comfort or distract him so the technician can attach the EGG electrodes, then keeping him calm for the duration of the EEG.
The one who (helps) hold him for his flu shot, his immunizations, blood draws.
Attempting to soothe him during an ultrasound.
Staying with him until the last possible second before he is wheeled off for strabismus surgery.
Comforting him as if it is a routine visit to the emergency room.
Helping him cope when there are too many people, too much noise, an automatic hand dryer, a dog who comes too close.
Being the one who constantly asks, What do you see?What do you see?What do you see?
Helping him to feel like any of this is normal.
This is us and it is more than enough. For many children with CVI, the list is even longer, filled with things you could not imagine.
Most of us were rarely sick as children. Growing up with a mom who had her own lifelong health conditions – her experiences are far more memorable than mine – I have only sparse, fragmented memories of my few childhood medical experiences. So few and far between, that there was never the opportunity, like my son has had, like so many of our kids have, to become so familiar with medical procedures and routines. It is hard to grasp their childhood experience, the rigorous schedule of multiple medical and therapy and hospital appointments that you have known your whole life. Then we add CVI, in all its complexity, when it comes to interpreting and experiencing the myriad sensory environments of the medical and therapy and educational worlds. Trying to make life better down the road.
As a parent, it is hard being the constant bearer of hard things.
More than anything, it is hard being them.