Language
  • 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

Lunch Date with a Tubie

Lunch Date with a Tubie

We decided that the boys would pick me up from work and we’d take the dog to the groomers, then go out for lunch while we waited for him to be beautified (aka de-fluffed!).

We ended up in Pizza Hut, a place Sam enjoys because he loves the music they play and the atmosphere.

However, it always brings a little moment of awkwardness when we’re asked would we like a children's menu, or when ordering what the little man would like.

Sam is PEG fed, completely nil by mouth (although he is allowed the odd taste now and again), but the servers aren’t to know that!

We always explain the situation and that he has his feed with him – we try to time going out for food with Sam's feed times, so we’re not sitting eating in front of him while he waits for his.

Still, it makes me sad on a level that is positively visceral; I’d love my little boy to be able to join in and snaffle pizza like his fellow 5 year olds rather than be fed through a tube directly into his stomach.

His complex disabilities also make it difficult to try and engage him with anything – although now we will always ask for a childrens pack if they are available, and between the two of us we take it in turns to play with Sam and encourage him to do some colouring or to play a game.

It is exhausting.

You don’t get the same level of feedback that you do with a cognitively normal 5 year old, and it saps your energy as you are intently watching for the tell-tale signs that he’s enjoying himself or that its time to move on to the next activity.

He can’t talk, although he does vocalise; he’s registered blind although he does have some vision.

We know he can hear perfectly well, but he can’t respond to our suggestions or questions as clearly as other children can.

And it is soul destroying at times.

And then… then you see HIM.

The little boy, not the disabilities, focusing intently on colouring in a character on his page while his adored Daddy supports his hand while allowing him to do it himself.

Its only a brief moment, before the seizure activity overrides things and he struggles again to keep his eyes focused. But its there.

Its these little, fleeting glimpses of who my little boy really is that make up for the rest of the crap he and we deal with daily.

It’s a sign that regardless of his issues, he is winning.

Firefly Blog

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

Carolyn Voisey

Meet Our Blogger

Mum to one incredible little dude, I work full time in higher education and have my own small business as a jewellery designer/creator. I love nothing more than having time with my family, being outside and with my animals (chickens, cats, dog..!).

View Carolyn’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...