Parenting Outside The Lines

Parenting the Special Family From Diagnosis to Real Life

  • Home
  • Special Needs Parenting
  • Diagnosis
  • Global Disability Parenting
  • The Book
  • Resources
  • About Me

The Waiting Room : Now

March 24, 2015 By admin Leave a Comment

Mainwaiting1


Ten years ago I was a much different Mom sitting in this waiting room.  Now, seasoned beyond my wildest dreams, I have sat in more waiting rooms than I care to count.  The Rehabilitation Institute of Chicago is a massive place.  Floors of people who have suffered injuries, or strokes, or surgeries stay here and rehabilitate to hopefully their former functioning selves.

But where I sit with my daughter is the third floor.  The clinic portion of the rehab hospital, that on the days we are there, seem to be filled with kids of all ages.  The little ones whose Mom’s have hallow eyes and a look of desperation in trying to wrap their heads around this disability thing.  The seasoned parents who have older teenage/young adult children in complicated wheelchairs with feeding systems and communication pieces, who alternatively chat among themselves and suction their child.  Almost without thinking, they are on remote pilot.

Then there are the parents like me.  We have done this before.  Our child is in a walker, or a wheelchair, pre-surgery or post-surgery, going in for botox or x-rays or follow-ups.  I sign my daughter in, and head over to x-ray (where I secretly think to myself how likely my little girl is to glow in the dark at some point from all the exposure) and dutifully lie her down and hold her hand while they strap the vest on me.  

Then in to see the surgeon or doctor, where I somehow speak their language and we move through the motions of range and spacticity and facilitated walking.  Braces and botox and all the fun we have talked about for ten long years.   

I used to be leery of bringing my other kids with to these appointments.  You really do see a lot of people in a lot of very terrible bodies, and I was always worried it would scare them or they would stare.  But now the thought doesn’t even cross my mind.  They are used to this.  This is their normal, just as it is mine, just as it is my daughter’s.  They know now that people, and other children, in different bodies are still at their very core just people.  They don’t gawk, they don’t even ask.  

But as I marvel at how far we have come in our journey with disability, my heart aches for those new moms.  I see my own tired and scared eyes in theirs.  I want to sit next to them and tell them that they can do this, that it will be ok, that you will not always live with this overwhelming fear and grief.  

It always sounds so trite and silly to say “our new normal” but in reality that is exactly what it is.  Everyone’s family, no matter how perfect from the outside, has their own set of normal.  And when you do get to the ten year mark with your child, you feel strong.  You feel invincible and you feel like the problems and dramas of the mom’s around you are somehow so beneath you that you don’t even go to that place.   It’s empowering in every sense of the word.

Patty

Share this:

  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)

Related

Filed Under: diagnosis, disability parenting, special needs mom, Special Needs Parent, special needs parenting

« Feeling Empowered
The super hero flexibility of the special needs parent »

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

CommentLuv badgeShow more posts

Hi, and thanks for stopping by and joining me in this crazy, interesting life of parenting a special child.
Days may be long, but never boring - and I look forward to all of the amazing things that this kind of life, living outside the lines, will bring. More…

Follow Me

  • Facebook
  • Pinterest
  • Twitter

Subscribe!

Enter your email address to subscribe and receive new posts in your inbox!

Top Posts

  • Elearning Virtual disAbility Awareness
    Elearning Virtual disAbility Awareness
  • Our New Normal - Elearning
    Our New Normal - Elearning
  • The Myth of the Superhero Mom
    The Myth of the Superhero Mom
  • Sharing Stories of Parenting the Special Needs Child Around the World
    Sharing Stories of Parenting the Special Needs Child Around the World
  • Please stop learning at my daughter's expense
    Please stop learning at my daughter's expense
  • I Want My Kids to Think I Matter
    I Want My Kids to Think I Matter

Categories

Archives

Subscribe

Enter your email address to subscribe and receive new posts by email.

Copyright © 2023 Parenting Outside the Lines· Built on Genesis Framework · by Beyond Blog Design using WordPress · Log in

 

Loading Comments...