I Went Looking for Answers

           Just some of the stack of information I printed off. 

Several months ago, I found myself in a place that many families eventually reach.

I had questions.

Important questions.

Questions that affected my son Alex's future, his safety, his care, and ultimately his ability to continue living successfully in the community.

The problem was that the answers I was receiving didn't seem to fit the reality I was experiencing.

So I started digging.

At first, I was simply trying to better understand my son's injuries.

I pulled out old records from when he was injured.

I reread the notes from the first three days of his hospitalization, including the trauma room documentation.

I found the original MRI CDs.

I studied the anatomy of the upper cervical spinal cord.

I learned more about the cervicomedullary junction—the area where Alex was injured.

I researched diffuse axonal injury.

I searched for survival statistics involving injuries above C1.

Then the questions expanded.

I started looking at Home and Community-Based Services (HCBS).

Why were HCBS waivers created?

When were they created?

Who were they originally intended to serve?

How large was that population?

How many people rely on them today?

How are medically complex individuals supported within these systems?

Then I looked at nursing.

What exactly is skilled nursing?

Who defines it?

Who trains nurses?

Who trains home health aides?

How do you start a home health agency?

Who oversees those agencies?

How does someone become an independent provider?

How long do approvals take?

Who has authority over those processes?

Then I started examining facilities.

What is an ICF?

I called one.

What is a skilled nursing facility?

I called two of those as well.

What populations do they typically serve?

How many ventilator users live there?

How many individuals use diaphragm pacers?

Had they ever even heard of a diaphragm pacer?

How often do they encounter highly individualized situations?

What are the staffing ratios?

Do they have call systems for someone who is paralyzed from the chin down?

The deeper I dug, the more questions emerged.

And the more questions emerged, the more I realized something important.

Many of the challenges families face are not caused by a lack of caring people.

Many are caused by a lack of understanding.

Not understanding injuries.

Not understanding complexity.

Not understanding continuity.

Not understanding what success actually looks like.

Not understanding what works.

Not understanding why it works.

Over time, I began connecting what I was learning with what Alex and I had lived for more than twenty years.

Hospitalizations.

Attempts to access rehabilitation.

Home care.

Equipment failures.

Autonomic instability.

Community living.

Caregiver shortages.

Policy decisions.

Provider systems.

Facility recommendations.

Suddenly, pieces that once seemed unrelated started fitting together.

The journey is far from over.

There is still more to learn.

More to understand.

More questions to ask.

But I can honestly say that I understand far more today than I did just a few months ago.

And perhaps the biggest lesson I have learned is this:

Sometimes the people closest to a problem become the ones most motivated to understand it.

Not because they set out to become experts.

But because they are trying to help someone they love.

That is where this journey started.

And in many ways, that is still why I keep digging.

Because somewhere between medicine, policy, caregiving, and lived experience, there are lessons worth finding.

Lessons about continuity.

Lessons about complexity.

Lessons about community living.

Lessons about what allows people not only to survive, but to thrive.

Not only for Alex.

But perhaps for others too.

Information tells us what.

Understanding helps us discern why.

And wisdom helps us know what to do next.

#TheGoalIsLife