It’s not often that I get moments to reflect; my life seems like a never-ending whirlwind. But as I was walking in our lovely fall weather yesterday, I was struck with how beat up I feel. Reflecting on my life, especially the last year or two, I realize that much of it has been spent in survival mode, where I arise each morning and prioritize which dragon to fight today.

And I know I’m not alone. There are countless moms (dads too, but I don’t have that perspective) who awake every morning to the same slate of crises – the physical, emotional and financial challenges presented by their child’s disabilities, coupled with the challenges of securing medical treatments, therapeutic interventions and educational services.

Yes, it’s true, we’re always battling something. I look at the “to do” list in my daytimer and it reads like this:

• Call the insurance company
• Change the therapy appointment
• Email the school administrator
• Go to the doctor
• Remind SuperDad about the attorney bill
• Order more medications

This is in addition to actually teaching my child these days and my volunteer work with ATN. For others, this to do list is in addition to their full-time jobs outside the home, and of course, in addition to whatever other parenting and household tasks we have for the day.

And the problem with this, besides how busy it keeps us and all the extra duties that are added to our plate, is that each of these activities requires a heightened level of emotional investment too. We have to demand that the insurance companies pay claims; juggle therapy appointment; advocate for our children with the school; constantly consult with, explain to, and filter through the medical advice we receive…looking for doctors we can trust. And we’re haunted by whether we’re doing the “right” thing, whether we’re doing enough, whether we’re making a difference in our child’s life, whether we’re sacrificing too much of the rest of the family for this child, whether we’re not sacrificing enough.

It is through all this that we’re wounded. I, for one, am not in touch with my own wounds; I’m so focused on everyone else’s. But they’re there. And when I do get that rare moment to myself and I’m quiet, I can hear them.


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