• English
  • French
  • German
  • Italian
  • Portuguese
  • Spanish
  • Swedish
Back to Firefly Blog

The Voice

The Voice

It’s my daughter’s. And no, not my eldest daughter’s singing voice; although she does have a lovely tone to it.

It’s Lou Lou’s… And she wouldn’t even have to sing.

Just a word - a single word, any word at all.

Of course, the word “Mummy” would have me leaping from my chair Will-I-am style.

But my little Lou Lou, any word will do.

In the dark of night when she wriggles and squirms during her nocturnal wakings; it would be useful if she could tell me if she was hungry, if she was in pain or maybe just wanting cuddles or a play.

In the middle of a mealtime when she is still opening her mouth, as if for more, yet looking increasingly uncomfortable and throwing her arms around; it would be helpful to know if she wants more, has indigestion or if we need to speed up or slow down.

On the rare occasions that she cries; is she in pain or tired or bored?

When she chews her hands for the umpteenth time that day; is she frustrated or anxious or teething?

When she smiles or giggles, it would be amazing if she could share the joke with us. Instead we all gather round and laugh with her.

We don’t really need to know what has amused her. We just love to hear it. I’ve accepted that she will probably never walk. For some reason that comes easier than this.

I still can’t accept that I may never hear her say Mummy or Daddy or call her sister’s name.

She may never stamp her foot and shout “no!”, may never ask me “why?” or issue that familiar toddler refrain of “it’s not fair!”

But that is why when the emotion subsides and the whys? and why nots? and its not fairs (yes, I sometimes stamp my foot too!) remain unanswered, we have to be her voice.

I need to stand up and be counted, to nag and argue and many other things that don’t come naturally to me, all in order to get the best treatment for her.

If only she could whisper her message to the world to me, I would shout it from the rooftops.

Firefly Blog

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

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 4 months on

Purchases on £99+

UK 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 4 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 4-month period.
  • No interest will be charged on the purchase if you pay it off in full within 4 months. If you do not, interest will be charged on the purchase from the purchase date at the Purchase APR applicable to your account.
  • Any remaining balance due after the 4-month promotional period or any transactions under £99 will be charged interest at 19.9% p.a. (variable).

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.
  • In order to maintain the 0% offer, you need to keep up monthly repayments and stay within your credit limit. Credit subject to status. Terms and conditions apply. UK residents only.

Please wait...

Continue Shopping