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

“How Do You Cope? I Know I Couldn’t.”

“How Do You Cope? I Know I Couldn’t.”

Mostly from well-meaning friends, some of my son's therapists or even strangers who see how much of a handful my son and how hectic life can be.

Long days, usually starting at 3 am, quite often even earlier.

Even longer nights, where sleep is nonexistent, constantly waking to comfort my son who's distressed for no obvious reason.

Meltdowns that can last all day, kicking, scratching and biting.

Appointments coming out of our ears.

Constantly having to fight for things he needs.

Constantly fearing my son choking (he has a poor/delayed swallow).

Constantly on the phone chasing up things such as equipment, tests or appointments.

I could probably write a book of all the, 'non normal', stuff we have to do just to get through the day but to save sounding like I'm moaning, I'll just leave that there.

The thing is though, I never really quite know how to truthfully reply to that question.

I mean, I never really think about how I cope... I just try to get on with things.

Don't get me wrong, I've had (and still have) many, many, days where all I've done is cried, stomped my feet, felt like a failure as a mother and wondered, "Why me? Why us? Why my son?"

Quite often, I sit down at the end of a busy day and find myself thinking, "Wow, how did we fit all that in one day?!" "How haven't I gone crazy yet??"

But when it comes to it, the truth is, I cope because I feel I have to.

If I didn't, my son would have nobody to fight his corner for him...

And that would make things a whole lot harder for him.

He needs me.

He can't speak, so I am his voice, I speak up for him.

I am his home therapist, therapy needs to carry on at home too, right?

I am his pharmacist, making up meds and administering them in the mornings.

I am his secretary, answering phones, opening and replying to letters day in day out.

I am his carer.

(Somebody needs to tell someone, somewhere, that carers need caring for too!)

But most importantly, I am his mum and I won't stop at anything to get my boy everything he needs.

When people ask me how I cope it sometimes feels as if they think it's, 'too much', then I start to second guess myself..

- Can I really do this?

- Yes I can, I have too. Am I doing everything I can?

- I'm doing the best I can. Is it all enough?

- I hope so.

I hope, one day, all of our hard work will pay off and we'll see some progress.

I'll admit, caring for my son is without a doubt the hardest, most physically and mentally draining thing I have ever had to do.

Every day is so, 'full on', and non stop until bed time (which doesn't last long!).

Some days we can go all day without even so much as a smile from him, but when we do get one, even just a tiny smile before bed, it makes it all worth it.

So, yeah, basically the short answer - to the question, 'How do you cope?' - I do it for my boy, he needs me.

Firefly Blog

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

Emmy Heaton

Meet Our Blogger

Hi I'm Emmy, mum to AJ who has cerebral palsy.

View Emmy’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...

Continue Shopping