I have been writing this post in my head for days now.
Writing, erasing, rewriting, and finally now actually typing.
When you have a child with a disability, they say the early years are the hardest.
You are often moving through the stages of grief, whether you know it or not, and you are faced constantly with medical and health issues and figuring out a way to navigate through your new reality.
Most people find support through Early Childhood Intervention. It could be through parent support groups, learning groups, or professional support.
Then you transition out of the comfort of support at your fingertips and head out into the world of school and...well...life.
When we first had Ryley we didn't realise that our life was going to be so radically different.
We moved in and out of stages of grief, and left the friends behind that didn't support us.
This felt good.
Our new normal was ok.
But then as your child gets older, you begin to realise that they don't have friends to bring home for a play date. They don't get asked to go on sleepovers or even to play at someone's house.
The medical needs are more complex than ever, which means respite options are limited and costly.
The opportunities to participate in social activities are few and far between.
a) No one to care for the kids
b) In winter, at night is pretty much a no go for Ryley given his susceptibility to respiratory infections
This isn't a poor me post I promise.
We do have wonderful friends who we do get to hang out with, and do organise things so we can attend. Or we organise things at our house too.
On Sunday, I am running in the Mother's Day Classic which is a fun run to raise money for breast cancer research. Obviously this is a cause close to my heart seeing as my mother is a breast cancer survivor.
What confronted me the other day was a conversation I had in my lunch break with some colleagues who asked who I was running with, and was I part of a team?
Actually, I am doing this on my own.
I suddenly felt ashamed and alone.
It's not that I don't have friends.
The problem is that my best mates live out of town. Bit hard to catch up for a quick run.
I only ever have a tiny amount of time each week to even get out and run.
And honestly, I can't commit to anything because things change very quickly in this house sometimes.
I know that many other people I know who have a child or adult with a disability feel isolated at some point. Sometimes it is because of the diagnosis.
Sometimes it is because of behaviour.
Sometimes it is because it is all just too damn hard, and you get sick of false people and explaining and the stares and the comments.
It can be easier to just isolate yourself.
Thoughts? Comments? Experiences?