When you’re thrown into the world of ‘syndrome’ or any disability, you search for your kin, your community.
There is something inside you that forces you to connect with those who live with the same syndrome, they are the people you try your hardest to seek out.
If you're lucky, you may find them locally. If you’re very lucky you may already know them.
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.
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.
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!
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.
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 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.
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