"I See You, Dragon Mom": A Poetic Tribute to Rare Disease Caregivers

A poem to rare caregivers, by Laura Will

Today I see you with only love 

commend you

for cherishing what you can 

choosing to focus on 

the little wins 

on self care 

the present moment 

And when you cannot 

I hold you, and the ache that greets you 

most days before the morning sun 

and plays tricks in the night 

Forgive yourself, as I have forgiven you

all the envy born unwillingly 

of others with their blind assumptions and blithe prophecies 

sounding so simple, yet sickening 

to a mind that lost the luxury of expectations 

long ago 

Today I honor you 

and the rare strength 

that solidified, scar-like 

as you turn away from the mainstream and the milestones 

and trust what a good day looks like 

for you

for your loves

for now

If you feel like you could use more support, please identify the need and block out time to address it. We all need support - professionals and/or peers. I benefit from both. Please know there are people out there just like you who want to connect with you: support groups through specific diagnosis organizations (via Facebook groups mostly), local developmental and child services organizations, palliative care organizations, and organizations that work specifically to support caregivers, such as Angel Aid. Reach out, find your people! They are waiting. 

Here’s a list of a few helpful resources:

• https://www.betterhelp.com

• https://www.angelaidcares.org

• https://www.psychologytoday.com/us

About Rare Resiliency:

Rare Resiliency is a monthly column written and/or curated by Laura Will. This column explores the concepts and skills that play a protective role against chronic and acute stress. Each article challenges and encourages the reader to continue to develop that inner steadying strength as they face illness and uncertainty, sorrow and joy.

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