before I even met Nick, a friend of mine in Maine learned her beautiful
blonde daughter’s developmental delays fell into the category of mental
And though I hate to say it now, I felt sorry for her.
A child with special needs.
What a pity.
I wish I knew then that pity is the last thing us parents need.
(And don’t even think about feeling sorry for our children.)
What does it mean to parent a child with disabilities?
It means the reframing of your worldview.
It means taking nothing for granted and spending more time in the present than in future plans and dreams.
It means endless appointments and paperwork and the introduction of your child to all kinds of adults who specialize in understanding his or her needs.
It means missing your own six-month dental check-ups and yearly pap smears.
It means growing comfortable with stares, even if your comfort is in knowing that you won’t be comfortable, but it will happen anyways.
It means knowing how to silence a pesky questioner with a single statement:
“His brain was injured at birth.”
“I have two wombs instead of one.”
“Why do you ask?’
“He has Cerebral Palsy.”
“There’s nothing wrong with him.”
“Well, he’s not looking at you because he’s legally blind.”
“What do you mean by Ok?”
It means redefining the words OK, healthy, and childhood.
It means continually adjusting expectations so you neither expect too little or too much but rather remain open to wherever your child leads.
It means learning to follow.
It means a redefinition of your social life because either your friends don’t understand or because you find yourself with so much less time to devote to cultivating friendships. You want to extend invitations to dinner, you truly mean to return the favor, but months go by and you still haven’t had an extra second to plan a social evening.
It means being so grateful to those friends who do understand.
It means working on learning how to scoop with a spoon instead of learning how to chew with your mouth closed, learning how to walk instead of ballet lessons.
Learning to go slow instead of racing.
It means letting go of comparisons and bailing out of the My-Kids-More-Advanced-Than-Your-Kid game.
It means becoming almost fluent in medicalese and actually knowing what the following terms mean: IVH-III, C-PAP, Nystagmus, Strabismus, Hydrocephalus…
It means doling out medications--even if you planned on raising all natural kids.
It means joy in the controlled bend of a knee, a flash of eye contact, sunlight on an orange Lilly, the sound of your young son saying, “No.”
It means befriending therapists, multiple adults that not only love your child but remind you when you most need to hear it that your doing a good job. “You’re a good parent,” they tell you-- and you realize that all parents could benefit from hearing this from interested parties and you think how lucky you are. It means always thinking you could do more.
It means wanting time alone as a family, without appointments, professional judgment, and medical advice.
It means multi-tasking, squared, times three.
It means buckling your son into his car seat to drop him off at daycare and then driving straight to work.
It means constant surprise. “Did you see what he just did?!?!”
It means never shaking the specter of death.
It means gulping joy like water.
It means questioning whether you can do this again, whether you can conceive and carry another child. It means wanting to try. It means not wanting to try.
It means fear.
It means acceptance.
It means hope.
It means never saying, “I don’t care if it’s a boy or a girl, as long as it’s healthy.”