• 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

Can I join your club?

Can I join your club?

On the 15th of November, I went to a conference all about Duchenne Muscular Dystrophy run by Action Duchenne, a charity who have offered me a huge amount of support since Sebastian’s diagnosis.

I spent the weekend attending sessions about every aspect of Duchenne, from physio demonstrations, advice on housing adaptations to a session about the affect on healthy siblings.

Before Sebastian’s diagnosis if someone else going through this had told me they were doing this, what would my impressions been? A weekend of having the diagnosis thrown in my face? A weekend of grief stricken parents crying? A confirmation of everything that is awful about Duchenne.

My feelings now? I love it. And here’s why.

When Sebastian was born, a slight paranoia I had about feeling lost and lonely and spending my days alone with a crying baby meant that instead I threw myself into baby groups, baby massage, baby swimming classes. I had done NCT classes.

I was very lucky that while many struggle with those early days, I finally felt like I had found who I was meant to be.

Not in the baby groups - let’s be honest, no one find themselves by awkwardly singing nursery rhymes with people they barely know to babies who are too little to care.

But in everything motherhood gave me. I believe that my happiness lead me build a strong network of fellow mummies.

And I’m not going to lie, the nursery rhymes may not have floated my boat but there is little doubt that the shared experiences of early motherhood, with its sleepless nights and life changing love, were powerful.

Two and a half years in, pregnant with number two as many of us were, Sebastian’s diagnosis pushed me out of a club of which I had so fiercely loved being a part.

That isn’t because I am no longer welcome. To this day, some of those people count among my closest friends.

In fact I could not be more welcome, yet at the same time I no longer quite fit. My world turned upside down and it can never be the same.

However hard I try to right it, it will always be off-kilter with the one I knew and I will always be off-kilter with the person I was.

Experiences are not shared as they once were and our journeys which started off in parallel are on very difference courses. I am not ashamed to say that I still miss that sense of belonging.

So rather than it being morbid or negative to spend the weekend with Duchenne as my focus, the opposite is true.

The power in that shared experience is multiplied and magnified.

Perhaps that’s because we all grieve it in our day to day lives and crave that sense of unspoken understanding, I will not have to explain the burden I carry.

It will be acknowledged without the need for words. I can share my life with Duchenne in all it is rather than feeling that it should be minimised, squashed into a corner.

I can let my brave face go. And there won’t be any nursery rhymes.

While the knowledge I gain from the sessions I attended will give me so much to take forward into my life, the true power is to be with people who understand the life altering moment that my son was diagnosed with DMD.

It is to know that there is still a club out there that I belong to.

Firefly Blog

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

Lizzie Deeble

Meet Our Blogger

I’m Lizzie, mummy to two beautiful boys. My eldest son, Sebastian, was diagnosed with Duchenne Muscular Dystrophy in October 2016 at the age of 2.5. He was diagnosed with Autism 18 months later. Sharing my journey into parenting, SEN parenting, living a life I never planned for and totally winging it!

View Lizzie’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...