Wheeling Danny into the hospital for yet another procedure, I stopped to reflect on the moment.
When did this all become so normal?
For the first year after Danny’s diagnosis, I constantly scanned the various waiting rooms and therapy clinics.
I would take stock of the babies with tracheotomies, mothers monitoring the feeding pumps, and watch as wheelchairs were being loaded and unloaded
“Hey, everyone! This is not normal!” my brain would scream.
I was acutely aware of how different my life had become, and I remember feeling as though this thought would never, ever escape me.
Prior to Danny’s birth, I had experience working as a case manager for people with intellectual disabilities.
I have been lucky enough to know and love hundreds of people with many types of disabilities in my lifetime.
I was the one on the other side of the table.
I got to go home at night, to my normal life, with my normal dog and husband.
Now, it was all flipped, and it was my son with cerebral palsy in my arms.
It was my baby that needed therapy and medical intervention.
I needed the help.
I felt like an interloper.
This was not how it was supposed to be.
What happened to my normal little life?
My husband and I attended our first parent support group meeting when Danny was ten-months old.
We were unsure of all of Danny’s diagnoses, but knew that they would likely be forthcoming.
Families around the room shared their personal stories, their victories, and their defeats.
While we heard some wonderful advice (some I still remember word for word to this day), my husband and I practically ran to the car afterwards.
I tearfully exploded, “I do not want to be a part of this club!”, we looked at each other.
We decided we could do nothing but continue to move forward.
Fast forward two years.
I cannot remember the last time I thought it was strange to push Danny’s wheelchair to swimming therapy.
I vaguely notice the oxygen machines and feeding pumps that surround us at doctor visits.
While any treatment that requires sedation is still anxiety-inducing, it no longer feels strange.
I hardly pay any attention to the people watching my son’s chair, and instead focus on making sure that Danny feels confident and secure wherever we may be.
This is our new normal.
It isn’t all bad, it isn’t all good.
It simply is.
And that’s okay.
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