The other day something happened to me that I took very personal.
I felt that I was purposefully left out of a gathering.
It’s not the first time this has happened and I know it won’t be the last.
As I talked to other mothers of children with complex medical needs, they shared their experiences with me.
Neighbors don’t invite you to a neighborhood bonfire because they assume you’re too busy.
Friends don’t invite you to a girls' night because you’ve declined in the past.
You’re an afterthought for a playdate because they know how you feel about germs during cold season.
I say to myself that it doesn’t matter but it’s human nature to want to feel included and I still hurt.
As I thought more and more about it I realized I don’t reach out.
The only plans I make are with specialists, therapists, and social workers.
It’s next to impossible to be the leader of a group outing.
Our son runs my daily schedule.
He needs constant monitoring and his care comes first.
You see, we’re still learning how to navigate this journey we’re on.
I have a hard time leaving him, not because I need him but because he needs me.
I apologize that I can’t always be present; physically, mentally, or emotionally.
My presence is required at home.
I apologize that I cancelled our playdate at the last minute because our son wasn’t feeling well.
I’m sorry that I told you I would call you on Friday and now it’s Wednesday and I’m just remembering.
I apologize that I said I would meet you for coffee but had to take a rain check because our son had a rescheduled therapy session.
I truly am sorry and I wish I could be a better friend than I have been.
Leaving him will get easier.
His ability to cope and communicate will progress.
I pray he won’t always be so medically fragile.
We’ll get better at transitioning from one appointment to the next.
His sensory issues will improve.
Inpatient stays won’t be required from a winter cold.
His anxiety when being left in the care of another person will decrease.
I pray it’ll get easier.
We’ll be better.
But for now, my presence is required at home.
Does your child use a "sleep system" at night?