To say we are all worn out is mildly an understatement.
We have had almost a month now of broken sleep (1hr at a time max) with Lil D and his reflux. Perfect timing with me returning to work.
I am on auto-pilot…teetering on crashing.
So today when our Gastro-Paed said he needs a gastroscopy,we jumped at the chance to make the booking for tomorrow. We need to know what is causing all of this.
In my heart I know it is true acid reflux and not caused by a dietary intolerance and therefore will require the same surgery our other daughter had a month ago.
I also know it isn’t behavioral. I know my little boy doesn’t happily roll around on the floor screaming and arching his back just to get his own way, because when he is pain free he is an absolute delight!
Doesn’t stop me trying to blame myself for it all though..
‘There must be something I am doing wrong’, Ms Criticism living in my head screams out.
‘Don’t be daft’, I try to politely and assertively say back.
One of my others struggles is with is those that under estimate the destructive nature this illness has had on our family and myself as the primary caregiver. It is unrelenting mostly, physically demanding on the caregivers and emotionally draining on the entire family. These babies are high needs babies and them and their families require a whole world of support from all that surrounds them.
As angry as I was for what happened when my husband requested to take tomorrow off work to be with us while Darcy undergoes his first anesthetic 3 hours from ourhome, I know it isn’t his fault.
It is easy for others to judge when they haven’t walked in your shoes. It is easy for others to make your life hard when the shoes aren’t on their feet. Why would they need to be accommodating…they think everyone can wear shoes as comfy as theirs if they only tried.
I guess those that have walked in these tight worn out shoes I wear know what it is like. To have any sort of child that requires special care from a disability or illness requires love and understanding.
How comfy are your shoes? Do you recognise when someone else’s is causing them pain?