• 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

When the List of Labels Just Keeps on Growing

When the List of Labels Just Keeps on Growing

We spend many of our waking hours flying the flag for those who are different, not better or worse, just different; we champion every milestone no matter how small because we know the effort and determination that went into achieving it.

And we know that our children are as beautiful, as wonderous as every other child in this world.

It is still hard however when the Dr’s have to add another label to our child’s medical file.

Seriously, you can tell when Sam’s notes arrive because they arrive on a trolley, all by themselves!

There are a lot of notes for my boy, folks.

Really, a lot.

Most of Team Sam as they are nicknamed have been with us since the very beginning.

We have added a few new names fairly recently to that Squad of medical specialists and I will not lie, it has been difficult to accept that.

Until recently we have carried on happily enough, seizures have been pretty stable and his height and weight continue to behave beautifully.

But as he’s grown his low tone is causing more and more issues that need to be dealt with; scoliosis for one, which we know will be progressive.

Increased saliva production (hypersialorrhoea) has recently caused more issues so a new medication was added in.

As parents, we are grateful that these issues are identified swiftly and dealt with to keep our boy safer for longer; but don’t for one-minute think that we don’t sob into the darkness when everyone else has fallen asleep.

Today while filling in yet another form which asked for a list of Sam’s issues I picked up his most recent hospital discharge letter and at the sight of that ever-lengthening list of co-morbidities I fell apart.

For the first time in a long time the anger and pain overwhelmed me completely.

So much to deal with for such a little boy.

And yet, so many others face the same battles day after day, and I am lucky to still have my boy with me.

So, as I have done so many times before, I put back on my armour and push the emotions down as far as they will go.

Now is not the time to cry.

Now I have to fill in this form, applying for funding to make my boys life better; and that is far too important to allow emotions to get in the way.

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...