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You couldn’t possibly understand

Jodi Shenal by Jodi Shenal Additional Needs

Jodi Shenal

Jodi Shenal

I'm a stay-at-home mom with two amazing children. My son is on the Autism spectrum and my daughter has a rare genetic disorder and multiple disabil...

It’s 9:00 on a Saturday morning. Frantically, I’ve attempted to call our Pediatrician’s office only to discover that they are closed. Dead end.

Next, I try calling the local hospital to get in touch with a nurse on duty. No luck there either.

I listen to an automated voice telling me over and over, “Thank you for continuing to hold.” I feel my patience wearing thin; my daughter has developed yet another dreaded ear infection.

I’ve become a pro at spotting the symptoms, as they are a common occurrence in our house.

Of course, this time, I’ve noted the tell-tale signs at the most inopportune time. As a last-ditch effort to reach someone who can see us on this weekend morning, I dial the Express Care Center.

I explained that I needed to bring my child in, but I didn’t want her to sit in the stuffy, crowded waiting room being that flu season is upon us.

“We’ve been packed since our doors opened” was the response I was given.

I went on to plead my case, hoping for some help.

Couldn’t I just make an appointment, sign my daughter in, and sit with her in the car until her turn came to see the doctor?

In my mind, that wasn’t such an outlandish request. I posed this politely, only to be met swiftly with a blunt “No, I’m sorry.” Someone would have to stay in the building to hold her place in line. Unwilling to back down, I proceeded to continue seeking assistance.

I wasn’t looking for pity; I just wanted a shred of compassion. I explained that my daughter has special healthcare needs and wouldn’t tolerate a mask over her face.

I point out that being potentially exposed to the flu or even a cold virus would not bode well for her.

For her, a cold is never JUST a cold. To my dismay, it was clear that I was taking up too much of her time. She couldn’t help me. She simply offered a final response of  “I understand.”

“I understand.” That last reply felt like a sucker punch.

As a huge lump formed in my throat, in an exasperated tone, all I could reciprocate was “Thank you, but NO, you DON’T understand.” Then, I promptly hung up the phone.

She was merely doing her job, but I was crushed. Defeated, there was so much more that I wanted to say.

What I really wanted to tell her was, “You couldn’t possibly understand.”

I longed to say to her that she had no clue what it’s like when my child spikes a fever and goes into a terrifying seizure.

I wanted to communicate to her how hard it is to console a nonverbal child, who is unable to express the extent of her pain.

I felt like sharing how I sleep on a tiny mattress in my daughter’s room when she’s sick, so that I can monitor her every breath.

I wished to tell her how heartbreaking it was seeing my child hospitalized for five days last year, because she picked up a common virus. I needed to say that my daughter’s immune system isn’t as strong as most kids’, and that I diligently strive to protect her from germs.

I yearned to relay all of this, to impart some knowledge and to gain some empathy.

Instead, I begin administering the antibiotic drops that I luckily found in the cupboard from our last bout with an ear infection.

I resume this typical course of treatment and hope I’ve caught it early enough to wait until Monday.

There’s nothing that parents of children with special healthcare needs wouldn’t do to protect our kids.

I’m not blaming anyone for their inability to comprehend what we go through.

We just need a little bit of grace.

Unless you personally walk in our same shoes…Unless you live THIS life and experience this reality as your “normal”, you just couldn’t possibly understand.


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