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.
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.
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.
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.
Do you 'baby wear' your disabled child?