Saturday, January 20, 2024

What's Changed? Almost Everything

What's changed:

No machines humming in the background.

I don't prep meds and do trach/g-tube cares any more.

I don't do breathing treatments.

For the first time in 31+ years, I don't have anyone in diapers.

It's quiet.

I don't order medications (4 different pharmacies) or medical supplies, or make sure we have pre-authorizations and fight for coverage of necessary meds. I don't request nursing. I don't make doctor appointments or rearrange schedules to make it to them. 

I don't track various treatments, medications, and specialists to optimize coverage because I'm the only constant between caregivers. 

I only have one child in public school. Aaron doesn't even have an account there any more. 

And this summer we'll be empty nesters. For most people, there's plenty of warning, lots of advance notice. It's slapping me in the face. 

We're only listed as having 3 people in the house in the church directory.

There are no nurses coming into our home. I deleted or deactivated (two nurses I just couldn't delete) the lock codes. 

We don't have dozens of tanks of oxygen in the garage, or medical supplies in the laundry room and basement.

I'm not planning Valentine gifts for school.

It's quiet.

I am not confined by "have to" schedules or locations. For so long I've laughed when we check into the ER and am asked if we've traveled outside the country. I don't even travel outside of Utah and Salt Lake Counties


I'm no longer a medical mama, at least to a child earthside. 

Now I'm an angel mama. 

A member of a club that includes some of the most amazing people I know, and a club that no one wants to be part of, or have a friend join. 

I've lost a lot of my identity. There's a whole community of amazing people I've come to know and love and respect at Primary's and other places that I am no longer connected with. 

There's a freedom that I never wanted, still don't. And it seems strange. 

It's quiet here. 

Sometimes too quiet. 

Deafening silence.

Everything has changed. 

Except my love for you. Love you forever, little man. 

Grief is so much more than just death. 
~Terri Guillemets

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