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

The Life of a Carer

The Life of a Carer

They then look at her and then back at me and you can see the cogs turning.

My daughter’s disability is in her muscles and her internal organs, you wouldn’t necessarily realise she had a disability with a quick glance.

Then the questions and statements come;

- All babies need a lot of care she looks fine, so why are you a carer?

- So is she going to die?

- How can she be disabled she is a baby, carers are for the elderly?

Generally I am fine with answering these questions with a sweeping statement about how her nerves and muscles randomly stop working, that her kidneys and heart are failing and no one can give a reason or an answer, that actually if you look more closely she does have physical deformities.

We don’t know if it is life limiting but as long as she is smiling I am smiling.

I just wish people knew how hard it is to be a carer to your own child. My diary is full of appointments with different therapists, different consultants, and different hospitals.

I am used to worrying with my other children; when should I change to normal full fat milk in the bottle, my son only said 5 words to his friends saying 10, and what shoes won’t scuff when we go to the park etc.

Now I worry about when and if my daughter will; walk, stand, talk or ever eat independently.

I now know so many words that even google struggles to find helpful websites for, usually it just churns out research paper links.

I now know that being a parent is such hard work, and yet being a carer and a parent is a different kettle of fish.

I have learnt that as a parent, you just seem to find this strength from within to be a Mama bear, who will protect her cub against the world.

Nothing could have prepared me for being carer, I would have thought being a carer to a child was no more than being a parent.

However now I am on the carer path I know that there is a difference, I am still a parent, however I am also a carer, both I put my all into and both come with their own challenges and stresses.

Firefly Blog

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

Rebecca Shayler-Adams

Meet Our Blogger

We are just a typical family muddling along our day to day lives. 4 kids, 1 with autism, 1 with an unknown neuromuscular condition

View Rebecca’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 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...