Recently I was trying to explain to my hubby why it sometimes gets under my skin when people tell me (regarding Esmé) things like, “I don’t know how you do it…you are just stronger than most people.” He said that I should take it at face-value and just accept the compliment that it is no doubt meant to be. I know he is probably right, but the emotional fact remains that it makes me feel sort of awful.

I suppose it gets me for a number of reasons, but the worst of it is because I feel a bit like it is insulting to Esmé, like others night see her as “too much” work…and suggests that they don’t see the particular and unexpected joys that can only only come (in at least equal measure to the difficulty) from life with a child like Esmé–a child who insists that you take her as-is on her terms, a child whose every inchstone is a major celebration, who constantly reminds us of the goodness in the world.

It makes me want to shake the person and say, “Yeah, it is totally hard sometimes. But, it could be 1,000 times more difficult…And, honestly, what is the alternative? I mean, really, just because it is hard, what am I going to do? Leave her at the firehouse? …is that what you would do with your kid?”

Because, no, of course that isn’t what most loving and prepared people would do. What most people would do is cry, be terrified, yell and scream…and then do the very best they can with what they have to work with (and maybe cry and yell again).

Telling people in somewhat unusual or trying situations that they are naturally “stronger” or better equipped to handle their difficult situation than other people is almost a denial of the very real and often overwhelming emotions that parents like me feel while trying desperately to be “together”…trying to accomplish something beyond just surviving day to day, trying to sort out some kind of stable daily life.

It also overlooks the tremendous amount of work that goes into life with a child who is medically fragile–work to construct some kind of structure that nurtures and challenges a child that lives in a precarious world where a simple misstep (a lost night sleep, too much stimulation, or exposure to a cold) might mean seizures, hospital stays, lost milestones. It overlooks the work in takes to maintain physical, emotional, and intellectual health in the face of building a life around the never-ceasing needs of another individual with an uncertain future… as well as the work of the intricate scaffolding of people who we have to rely on to make it all work: therapists, doctors, nurses, family, friends–people we’d rather not need to help us raise our daughter, but, honestly, cannot do without.

I am absolutely not strong enough to do this on my own…I work hard to make myself stronger every day, but I constantly fall short.

The idea that I am somehow naturally stronger than other people would be in my situation–that I am in some way built for this–is essentially a disavowal anyone’s life can go from status-quo to real life-threatening chaos in a single step that turns into a freefall. Because it can… and that, friends, is terrifying. And because that reality is so terrifying, most people prefer to think such things happen only to people who are somehow prepared for them.

But they don’t.

They happen to people, just regular people–imperfect people. People like me.

People like you.

2 Comments

  • Hi, I came across your blog on the Mighty today. My 12 month old has a lot of special needs (trach, vent, g-tube dependent), and I just wanted to tell you how encouraging your posts are to me. You speak truth. You have put into words so many of the thoughts and emotions I have thought and felt over the last year, but have struggled to verbalize and explain to my family and friends. Thank you for being the voice of truth for parents caring for children with special needs.

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