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If I had one wish

If I had one wish

“The most important thing in communication is hearing what isn’t said.”

As a mother to a nonverbal child with multiple disabilities and complex medical needs, this quote resonates with me.

Tremendously. Sometimes, I misread those unspoken messages.

As hard as I try to translate nonverbal cues, I often fail to interpret the signals correctly. If I had one wish, it would be for my daughter to have the ability to speak.

Not only to hear “I love you, Mommy” in a soft, sweet, angelic voice…

Not only to hear every detail of her day at school, instead of reading about it on paper and trying to fill in the gaps…

Not only to hear if someone was unkind to her…

When my beautiful, 11-year-old daughter is sick or in pain, time and time again, I desperately wish for her to be granted the gift of speech.

It’s in these times when I long to hear her voice the most. If she had the power to express what she feels with spoken words, I could save valuable time spent guessing and investigating…I would know with certainty, and I could FIX it.

We are working diligently on teaching her how to communicate with an Augmentative and Alternative Communication device.

She has made valiant strides, but this intricate artform is a work in progress.

Of all the things she’s beautifully learning to “say” with her device and also with pictures and gestures, “hurt” is a concept that is exceedingly challenging for her to convey.

She was sick recently with a stomach bug, that in turn irritated her stomach and throat, finally settling as ear infection.

She rarely cries. She never stops playing to lay her head down and rest.

When this does happen, or when she spikes a fever and has a febrile seizure with no obvious cause, we know SOMETHING is wrong.

During sleep, if her heartrate is high, we know SOMETHING is wrong. Her Daddy and I quickly transform into sleuths.

We explore every possible scenario that could be occurring. We carefully consider and investigate every conceivable origin, from head to toe. It breaks our hearts when she can’t tell us what hurts.

All the while, we try with all our might to hear her words that are not spoken.

Countless times, bloodwork and other invasive tests have had to be performed to diagnose a problem; to narrow down and eliminate potential culprits.

She’s endured numerous painful spinal taps, urinary catheterizations, and needle sticks over the years.

I try to never throw the word “unfair” around carelessly, but this IS unfair to her; it shouldn’t have to be this way.

I NEVER feel sorry about our situation but watching her suffer without the ability to express it verbally absolutely renders me helpless.

I will always wish for this one, solitary, precious gift.

While she is unable to relate her feelings with spoken words, I will continue to carefully listen with each and every one of my senses.

I will work tirelessly to help her find her voice. She has so much to say.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Jodi Shenal

Meet Our Blogger

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 disabilities. I am passionate about advocating for my children, writing about our experiences, and raising awareness for other families in our shoes. Our family lives for the little things and we've learned to appreciate all the beauty that surrounds us

View Jodi’s Profile

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