Fragile, not broken

Before Micah's Fragile X diagnosis in 2019, my awareness, knowledge, understanding and compassion for children or parents of children with additional needs was incredibly limited.

I think if I'm completely honest, especially when it came to children with a 'hidden disability', I was probably very naïve and ignorant. I would have been sympathetic to things I'd seen or stories I'd heard, but wouldn't have spared a lot of thought about it as it didn't impact me on a day to day basis. I would have most likely seen any negative behaviours through judging eyes and linked negative behavior to lack of discipline. And if I'm brutally honest, from the stories I had heard, I was thankful I wasn't a special needs mum.

Why is it called Fragile X Syndrome?

FXS is caused by changes in a gene called FMR1. The FMR1 gene usually makes a protein called FMRP which is needed for brain development. People who have FXS do not make this protein.

Symptoms of FXS are more severe in males compared with females, because females have two X chromosomes so an inherited fragile X gene can be compensated by the healthy X gene. Boys only have one X chromosome, so a fragile X gene is their only one.

Fragile, not broken

Over the past three years, having two children with additional needs has been extremely eye opening, incredibly humbling and a complete challenge. Not only in how a disability affects the child but also how the disability affects so many if not all aspects of our life now.  

Micah and Asher aren't broken because of their disability but it does mean that they are more fragile. And that means our life is also not broken but it sure does look different and everything seems that little bit more fragile. Things like:

Our present day
Dreams and aspirations
Expectations
Flexibility
Conversations
Holidays
Special occasions and events
Mental health
Confidence
Personality
Mental and physical energy
Faith
Marriage
Finances
Friendships
Extended family relationships
Sibling-parent relationships
Sibling-sibling relationships
Adding more children to the family
Education
Work/life balance

All of these things, although not broken are now fragile and need to be handled with more care, more thought, more time, more patience, more energy, more attention, more kindness, more acceptance and more adaptability.

So, to the special needs mums and dads:

Sorry for my naivety, ignorance and judgment. I get it now.

and to everyone else

Please handle our children with care but also us.

Love from 

A special needs mum x