“Typical” children astound me—I look at them as if they’re
aliens because neither of my children has full health (they have been given six
diagnoses between them, and both are considered autistic). I know in my head
that fully functioning children are still the norm, that women’s bodies (by and large)
know instinctively what to do to create life and deliver it in perfect
packages. (That happens every day, I
remind myself, astonished.) I am
currently studying to become a nurse, and one thing that surprises me daily is
that despite the complexity of the body, most of us are extremely healthy. We
also possess an incredible ability to heal when our health goes awry.
I know that my pregnant
body, too, did a good job. I have gorgeous children who possess all their
fingers and toes and functioning muscles. They can produce words, are capable
of affection and emotion as well as humor, and they do learn. But one’s heart
folded incorrectly, probably in those first couple weeks in the womb, which set
off a whole series of post-birth operations, surgical accidents, and
developmental fall-out. His twin mysteriously regressed at about two and lost
all the milestones he’d achieved.
Needless to say, I’ve been living in a whole different
world. And it’s all right—I really mean that. I think I’m privy to some insight
that I wouldn’t have otherwise, which is extremely valuable to me though it’s been
costly. I’m not saying these things to call forth your pity or excessive admiration.
But my life is very different from yours. So different, in fact, that I
sometimes can’t relate to “ordinary” people. They mystify and sometimes downright
irritate me. In a week in which the CDC announced another rise in the number of
autistic children (1 in 88), I’m no doubt a little more cranky than usual.
But I’m off the point: Listen, you are complaining about the
loss of sleep, the two o’clock feedings, the soreness of your breasts, about
managing your other two children and your husband’s work schedule, and I want
to yell, “Stop! Do you not see the
bliss on your newborn’s face, the blush in her cheeks? Could she be any more
perfect? Do you realize what a privilege it is to have these so-called
problems? So seven-year-old Michael’s not doing as well as his peers with
reading, and you have to nag Natasha to practice the piano—but Michael’s only
seven, and he’s reading, for godsake, and Natasha—don’t even get me started. She
can decipher music and manipulate her fingers across a keyboard well enough to
play? That’s simply amazing to me. And here you are at a coffee shop, looking
for all the world like someone who’s showered and is wearing clean clothes.”
This may sound a little like “when I was young, I had to
walk three miles through the snow to get to school,” but bear with me. Basic
daily tasks were tough to manage, if not absolutely impossible, when my
children were infants. How, for example, do you take a shower and ensure that
your baby is still breathing through his tracheotomy? How do you help your
significant other get enough rest to function at work when you both are
awakened by a tantrumming toddler who screams from two until five in the
morning many nights of the week for years? When does the laundry get washed—okay,
maybe it can be wedged in, between occupational therapy at one and speech
therapy at three, but who knows?
And now that my kids
are eleven, I still have trouble with these tasks. I certainly could never bring
them into a coffee shop for more than maybe ten minutes. One child would bother
patrons who are studying their computer screens (because he loves computers) or
would go behind the counter so as to investigate the cash register or push
buttons on the microwave (he blew up the one in our home). The other child will
be overwhelmed by the smell of coffee, the large number of strange people, and
heaven-only-knows-what-else because his sensory system just can’t cope with the
intricacies and—what is to him—the onslaught of our world.
I don’t mean to be persnickety although I’m sure I’m coming
across that way. And I don’t mean to imply that I do not ever enjoy my children
because I do. I realize, too, that neurotypical children can also be challenging.
Besides, difficulties are relative, right? If you’ve no experience other than the
reality you’re living, your life can seem quite difficult. I, too, am reminded
of this fact when I see people in desperate poverty, in our country or elsewhere.
Or when I think of friends who have an autistic child (or children) who are
divorced and parenting solo, or those whose children are more severely
impacted, having to spend weeks or months in hospitals or lock-down units
because they’re so dysregulated that they’re violent or self-abusive. I have a
friend whose life was forever changed by her son with special needs, only to
have him die at eight and a half, which was beyond unfair. Believe me, I know I
have a great deal for which to be thankful. Still, I don’t know if my children
will ever be fully independent, or even independent enough to take themselves
regularly to a bathroom. This is a whole different level of worry.
So go ahead and complain—sometimes we just need to. I get
that. But don’t fooled. Your troubles are not that bad.
I was recently reading a piece about Angelina Jolie
because…well, I’m a bit obsessed—she's beautiful, her husband’s beautiful,
they have this exotic, beautiful menagerie of children. She and Brad were
attending some banquet (I forget which one) where Brad was nominated for an
award. The interviewer asked Angelina something to the effect of “Does he get
nervous about these things?” And her reply was something like “Oh, a little.
But really, if your children are healthy, what is there to be nervous about?” So
now she’s my personal hero. How can that come out of the mouth of a starlet
when so many day-to-day people don’t even realize such a thing? Talk about a
true madonna.
Some people make so much of their children’s “issues” that
it feels to me like they’re making things worse. There was a woman in here last
week who was hectoring her son relentlessly about his math, really going at him,
which made me feel embarrassed and sorry for him (irony of ironies, he had the same
name as one of my sons). And a friend recently told me about a hockey practice
she went to where a father yelled out at his child, “Try not to be a dumb-ass.”
Say what?!
I don’t think you will do that (I certainly hope not). But please
recognize that half the things you are worrying about—okay, I’ll just say
it—are stupid. Honestly, if no one’s
dying, there’s not a problem. (I sat at the bedside of my heart-baby for two
weeks and didn’t have a place I could even touch him, he had so many tubes coming
out of his jaundiced, swollen body, so you can take my word on this one.)
Breathe. Look around (it’s a stunning day). Listen to your
friend—really listen. Enjoy that
baby’s sleep. For heaven’s sake, enjoy that baby’s sleep.
