My child has a disability.

In fact she has multiple disabilities.

I clearly remember the first time I processed those very thoughts in my head.

I honestly think it wasn’t until several months after her first birthday.

You see our good friends gave us a book entitled “Just the Way I Am” by Krista Horning (who has a disability herself).

On reading the book, I was rather taken back and emotional. 

Who said my daughter has a disability?
 

I certainly hadn’t categorized her in that group of people yet.

A group so vast and varied, and widely unknown to me.

Granted, she was born very early and had chronic health conditions and many needs.

But a permanent disability, seemed, well, permanent.

After giving it some thought and having a good cry, I came to the conclusion that yes, she does have disabilities, and well, we’ll just deal with it.

I had to finally accept that her 'issues’ were more than a collection of health problems.

We have always had access to good healthcare, good insurance coverage, good equipment and therapy services.

I cannot imagine how our different our lives would have been otherwise.
 

Brielle probably would not be alive today.

I feel very blessed for all we do have.

I am not by any means saying things are or have been perfect.

Many things I look back on and wish I could change, or would have been better.

And I also wish she was getting more therapy time, and I’m frustrated waiting for her school placement and provision.

But I do know that she is very lucky to have had so much input in her four years to date.

Many children with disabilities around the world simply will never have anywhere near as much opportunity or support as Brielle, which makes me so sad.
 

I have this aversion to people feeling entitled.

The “My child has _______, therefore he/she has a right to receive so and so”.

By virtue of a person’s individual needs and disabilities they will be deemed to be ‘entitled’ to certain things.

I prefer to not take anything we are given for granted.

To have a spirit of thankfulness and appreciation for all that we do get due to Brielle’s additional needs.

I certainly do not feel a ‘entitlement’ to her receiving care, respite, funding, equipment, disability living allowance, a disabled parking badge, or any of sort of support and help from the government.  

We have it much better than the majority of the world, that’s a fact.

I count it a huge help and a blessing.

These are things she needs, we need as a family, and I am so grateful for anything that makes our lives (that is anything but easy sailing) a little bit easier to navigate.

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