"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:
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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