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

To My Kin

To My Kin

You may find them locally, you may already know them.

I remember desperately searching the Internet for my, ‘kin’.

I felt I needed to speak to other mothers who were given the same diagnosis, I wanted them to answer my questions.

I believed they were the only ones who could truly understand me and give me some sort of glimpse into my future... Ethan's future.

I eventually found a few members of my, ‘kin’, scattered all over the world.

Some were new to the diagnosis as was I, others were further along the diagnosis and many had lived through it all - they were still standing and offering support and advice to anyone who needed it.

Back in 2008, when Ethan was diagnosed, there was little information about Hunter Syndrome, there was less information about families living with it and even less information about where to get support.

I found an online forum, where I connected to some wonderful families.

Each of them answered my often blunt questions and each of them explained that there were many different severities with the syndrome.

They gave me hope... they gave me lists of specialists... they gave me suggestions for therapies... they were and still are invaluable to me.

The most important thing they gave me was indeed honesty.

They never lied- I appreciated that. I needed that.

Rose-tinted glasses are not something that should be offered to parents raising a terminally ill child.

We need honesty, with lots of, ‘You’re not alone’.

In the early years of diagnosis I needed this, ‘kin’. 

I needed those who knew exactly what I was facing, to hear me and to help me; which they did and have done for 8 years now.

Many of these ‘kin’ are now my family, I love them and their children dearly. I am forever grateful for them.

As the years rolled by, I learned that I could keep these, ‘kin’, but also find new, ‘kin’, and those new, ‘kin’, were very easy to find - they were everywhere!

Walking down the road, I often see my, ‘kin’.

She pushes the buggy, while her toddler roars for her to carry her, the baby begins to cry. She is tired. She smiles as she passes me - she is my kin.

She sits beside me in the waiting room. Her child is sitting in his chair flapping his arms and shouting. I ask his name. Her shoulders drop and we talk - she is my kin.

She struggles to breastfeed her baby who is starting to scream, she feels people are staring - she is my kin.

She lays awake thinking about all the things she should have done today, all the times she lost her patience, all the appointments she has to keep, worry lines decorate her forehead - she is my kin.

She laughs at the new thing her child has learned and wants to tell everyone who will listen! She wants to brag about her child, she wants you to see what she sees - she is my kin.

She beams as her child cycles for the first time; the age of the child is irrelevant. The fact that she has helped her child learn a new skill is filling her with pride - she is my kin.

She smiles as her child stumbles towards mine. She helps with their words. She has spent years in therapy and now her child can say their name and walk - she is my kin.

She is tired of the temper tantrums, the toilet accidents, the demands her toddler is screaming. She wants to grab the child and hide from the public - she is my kin.

We have all been there to some degree.

Yes not all have to face the same reality some parents (like me and others) have to face and that is life.

But; we are all kin for we are all mothers, doing our best, loving our children with every fiber of our being and worrying over things we simply cannot change nor predict; but we will still worry because that is all part of being a mammy.

I for one am tired of seeing my kin being torn apart on social media for everything. From how they raise their kids to what they feed their kids - let's stop.

We are all mammies doing our best.

We are all different but the love we have for our children is the same.

There is no other love in this world greater than a mother's love (and fathers, but this is about mammies!)

To my kin, thank you and you’re not alone.

Firefly Blog

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

Ger Renton

Meet Our Blogger

Mummy to three boys and now a mother to a fur baby, Lola. Wife to D and lover of music, books, writing and reading. I'm a believer in the power of mindfulness, it's definitely the best gift I ever gave myself!

View Ger’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...