Military Special Needs Network
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The New Elephant in the Room
There are plenty of things that I have come to terms with when it comes to my daughter’s disabilities (more like ‘plenty-of-things-I-pretend-to-come-to-terms-with’): Adding diagnoses, changing medications, trying new therapies…..The road to acceptance has been long and winding, but I am making progress. Or, I thought I was.
The enormous elephant in the room is this new $12,000, humungous, awful wheelchair that was delivered today. The vendor representative walked up the sidewalk this afternoon, pushing this contraption, and I swear I had an out of body experience. I couldn’t do anything other than stare at it – this complicated, complex, horrible apparatus that was about become part of our lives.
It was an earth shattering reality check. The therapist opened the door because I physically was unable to move from my spot by the window. I knew that once the door was opened, and the chair wheeled in, my new reality would begin. Sure, I knew what I was getting – I ordered the thing! But reality doesn’t really sink in until it’s there in front of your face. The vendor representative brought the chair inside. I just stared, not acknowledging the man or his presence. To break the silence, the therapist said, “Oh, wow – her posture will be so amazing now!” I cringed. And sobbed.
In the meltdown that followed my panic (in front of God, my daughter’s home therapy team and everyone), I thought, “Why exactly does she need that? What good will it do?” I lost it. Internally I raged, “WHY???? MY DAUGHTER DOES NOT BELONG IN A WHEELCHAIR! I cannot allow her to be stared at twice as much now because this horrible wheelchair might as well have a big, fat, neon sign on it that screams Look at me! I’m disabled!”
After a few minutes, feeling somewhat composed, I found my way back to reality. I placed my girl into the new chair. She didn’t cry. In fact, she actually kind of LIKED it! She did her typical arching and growling, but overall she did well. She’s happy, and I hate it. I HATE, HATE, HATE that THIS is my daughter’s “normal” now.
All of the readers here on MSNN have a dependent or loved one with disabilities. You all understand and ‘get it’ when it comes to others’ staring and judging. When you add a wheelchair to the person’s disabilities, it adds another dimension. You get the added questions and comments: he “shhh…don’t look at her.”, the “I wonder what her lifespan is?”, the “oh-you-poor-pitiful-thing.”, and then, of course, the write-offs as “just another burden on society.” It hurts. It’s heartbreaking. And, it’s exhausting to think about the increase of comments and looks this very large, very in your face contraption will add.
Right now, I can’t muster up the energy to be all happy-happy for her stupid, new chair. I want to beat it with a baseball bat. I want to hit it until her disabilities go away and the need for this stupid chair is gone. I want to hide in a bubble and never leave the house. I want people to look at my baby and see what she CAN do, not define her by the chair. And people WILL judge. The jerk at the grocery store is not going to understand why staring at my girl and the chair will cause me great pain. The old lady at the post office isn’t going to understand when she gives me the “oh-poor-baby” face and I want to punch her in the throat.
This new chair signifies so much more than a new ride. This is the beginning of the ‘change.’ She wears adult diapers now. She has no independence. She relies on me or a nurse to care for her – and will for the rest of her life. We ordered a Hoyer lift. We’re ordering a sleep-safe bed. This is it: this is my life. And some days, it’s hard to deal with it.
3 comments on “The New Elephant in the Room”
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Military Special Needs Network 
I love your story!!!! I am so with you. The Wheelchair is on the back burner simmering for about year 2 now. 2013 it will be moved to the front and I will scream kick and cry and think of your story. I get it.
Very useful blog. Keep up the good work.
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