• English
  • French
  • German
  • Italian
  • Portuguese
  • Spanish
  • Swedish

Insurance Funding Request

Did you know Firefly products may be funded by your insurance?

Learn More
Back to Firefly Blog

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

Become a Firefly Blogger

Would you like to write for Firefly? Join our blogger network of parents, therapists and professionals.

Get In Touch

Become a subscriber today

Join over 40,000 subscribers to our weekly newsletter with insightful articles just when you need them.

Join Mailing List

By using our site you agree to our use of cookies. Click here for more info.

Accept & Close

No Interest if paid in full in 6 months on

Purchases on $99+

US Customers only. Subject to credit approval. See terms below

Paypal Credit

Pay now or pay over time with PayPal Credit. Just use PayPal Credit in PayPal checkout.

Subject to credit approval.

Purchases of $99+:

No Interest if paid in full in 6 months on purchases of $99 or more.

  • A minimum monthly payment is required and may or may not pay off the promotional purchase by the end of the 6 month period.
  • No interest will be charged on the purchase if you pay it off in full within 6 months. If you do not, interest will be charged on the purchase from the purchase date at the Purchase APR applicable to your account.
  • For New Accounts: Variable Purchase APR is 25.49%. The APR is accurate as of 6/1/2018 and will vary with the market based on the Prime Rate (as defined in your credit card agreement). Minimum interest charge is $2.00.
  • Individual items that are less than $99 qualify for special financing when combined for a total of $99 or more in a single transaction.
  • Multiple separate transactions of less than $99 per transaction cannot be combined to meet the minimum purchase amount.

Purchases of $98.99 or less:

Buy now and pay over time with PayPal Credit when you spend $98.99 or less.

  • If you pay your balance in full each month by the payment due date that is on your statement, you can avoid paying interest.
  • Or, make minimum monthly payments, or any additional amount of your choosing, until you've paid off your balance according to your standard account terms. Please note, interest charges may apply.
  • We'll send you email reminders when your payments are due. You can also keep track of your account and view your statements online at any time.

About PayPal Credit

  • PayPal Credit is a reusable credit line available on purchases at thousands of stores that accept PayPal. It's also available for purchases on eBay and exclusively at thousands of other online stores. Plus, it comes with the same security and flexibility you trust from PayPal.
  • If approved, we start you off with a minimum credit line of at least $250. See FAQs for more info.
  • For New Accounts: Variable Purchase APR is 25.49%. The APR is accurate as of 6/1/2018 and will vary with the market based on the Prime Rate (as defined in your credit card agreement). Minimum interest charge is $2.00. See Terms and Conditions tab for more info.
  • If you miss a payment your late fee could be up to $38, even less if it's your first time. See FAQs for more info.

Please wait...