APRIL 28, 2023

One year ago today, my beautiful grandmother passed away. 

I flew out to Puerto Rico to visit her shortly before she unexpectedly and suddenly died.

Looking back, this laid the foundation to start Welcomed Co™ six months later.

ABUELITA

My Abi, as I called her, was a strong-willed, proud, gorgeous woman, and she was deservedly a little vain. 

Abi was aging, but comparatively healthy. 

Unfortunately, she adamantly refused to use a walker. 

She also refused to use her hospital bed after a bad cut on her leg (due to not using said walker), and that reluctance ended up indirectly killing her. 

Rather than sleep on her hospital bed at home, she snuck off to sleep on her couch, and in the process she tore open the stitches on her leg. 

(It was a gut punch when I saw that her at-home hospital bed was the identical make and model of the bed that insurance had also provided for my son.)

Abi’s leg did not heal, became gangrenous, was amputated, and shortly after the surgery, she died. 

STRESS

The human body doesn’t differentiate between physical and emotional stress.

As someone with a rare autoimmune condition called generalized Myasthenia Gravis (gMG), losing my grandmother was sufficiently stressful to cause a flare in my condition.

My gMG can affect my energy level, vision, fine motor skills, and swallowing. (I am lucky that it has never affected my breathing.)

Additionally, I had been fielding many calls from parents of children dying from undiagnosed conditions, asking for my help–after having recently lost my oldest son.

In case you’re wondering, this is VERY stressful.

THOUGHTS

When you can’t really read, drive, type, or get out of bed, you have a lot of time to think.

So, think I did. 

I thought about the nature of invisible vs visible health conditions. 

I thought about the differences between pediatric and adult health conditions and perceptions.

I thought about disability, identity, and language. 

I thought about mental health.

I thought about systemic inequities. 

I thought about challenges to improving quality of life: scientific, academic, regulatory, policy, financial, business, diagnostic, therapeutic, access, systemic... 

I thought about the greatest impediment: human nature. 

I thought about the whys, history, and incentives surrounding human nature. 

I thought about what had made my grandmother and my son happiest. 

I thought about grief.

I thought about beauty. 

I thought about why the products for the people I loved the most were so ugly. 

I thought about the past, the future, and the present. 

I thought about the nature of time.

I thought about how my seemingly broken eyes, hands, and heart could do good today.

I thought about love.

HOPE

On this foundation, my daughter and her friend, Betsy, lit a fire that summer.

We all have come a long way in one year.

For the first time in a long time, I am hopeful for what this next year will bring.

Photo: Cristina and her Abi (Abuelita) on April 25, 2022