Long
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
retardation.
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.”
It means…
kylah_222 wrote:
I can't even tell you how much I love this. Perfect.
10/6/2008 12:51 PM CDT
heather3boys wrote:
"I don't care if it's a boy or a girl, as long as it's healthy." That's the one that gets me the most, like a knife, that one is...
We know our SpEd kids are amazing and never to be pitied. I know I'm grateful for my sons abilities to teach me how to be a better person.
Thanks for writing!
10/6/2008 1:12 PM CDT
nursetara wrote:
love it christy, it also means letting go of what we thought was going to be. The letting go is never a bad thing, just opens you for things maybe you were not expecting but help you grow and learn something anyway.
10/6/2008 4:56 PM CDT
Elias's Dad wrote:
I had this horrible thought the other day as Elias's nose began to run and his cough cracked deep in his lungs....
Please don't get pneumonia, I don't know if I can handle the hospital right now too.
But I know with Christy by my side we could, because together we have found strength.
Instead, Elias is at school today, then off to daycare.
Thank Goodness.
10/6/2008 5:24 PM CDT
Noel Dennehy wrote:
All I can think about when I read what you write is that you are the perfect parent for Elias and how lucky those children are, where you are working, to have you.
10/6/2008 6:28 PM CDT
Duffy M. wrote:
As an aunt to a child with Ds, I know my family can relate. I get very annoyed when I hear from a friend that another friend is pregnant, but waiting for test results before she tells anyone. Then when she decides to tell people she says she's having a healthy baby boy. Well my sister did the tests and could still say that she was having a healthy baby girl... with Down syndrome. It bugs me because I don't want to admit to myself that my friends that I was so close to are vastly different in our views. Your posts always make me think! Good luck with school.
10/6/2008 8:42 PM CDT
pili&gavin&girls wrote:
we love all of you...more than bacon!!!!I hope the universe expands enough for us to see all of you soon. Lots and lots of beautiful thoughts to you.
Pili
10/7/2008 12:30 AM CDT
Following Elias wrote:
I love all your comments--thank you thank you thank you! They keep me going when life feels overloaded.
Yes, Tara, it sure does mean letting go...which can open all kinds of new doors.
And Duffy, I recently had a friend tell me about her friend who "had" to terminate her baby because the test came back positive for Ds and I remember feeling surprised that she framed it as if there was no choice because I too forget how altered my worldview is from many of my friends. Thanks for sharing and making me think:)
And Nick--Elias's Dad-- I couldn't do any of this without you!
10/7/2008 10:31 PM CDT
Niksmother wrote:
Great post!
10/8/2008 10:07 PM CDT
Nelba wrote:
Thanks for this reminder of how our children redefine our lives. A friend of mine once said that we didn't realize how much our lives changed because of Loren. She said it like it was a bad thing. Another friend who had a child with CP said the exact same words. There was approval in her voice.
10/11/2008 2:28 AM CDT
mamacantik wrote:
I love this post. What rings most true for me is the constant surprise and the "Did you see what he just did?!?!"
I do this ALL the time, constantly marvelling at any milestone or achievement, however small because the other thing having a child with a disability means to me, is NEVER forgetting just how close I came to losing him and also those terrible meetings with frowning doctors after he was born warning us of what the future would bring.
I really believe every day with my son is a miracle.
Elias is a gorgeous boy. I love to see how beautifully he is growing up.
Dianne
xo
10/11/2008 4:44 AM CDT
liz.ullery1 wrote:
Wow. Perfect.
My brother has Ds and I should print this off for my Mom.
Thank you.
~Liz
http://agiveawayaday.blogspot.com/
10/12/2008 12:05 AM CDT
Following Elias wrote:
Nelba, I can see how that same statement can be said so differently--and how those of us on the inside of the world of special needs know that more often it is changed for the better.
Dianne, thanks for adding that it also means always remembering the miracle of our kids' precious lives, especially after they surpass the expectations of frowning docs.
And Liz, please feel free to print and share with your mom. Thanks for writing.
10/12/2008 8:35 PM CDT
Posted by: Christy | 09/27/2009 at 06:51 PM