My first poem was one I wrote in kindergarten about fireflies. As an adult, I am still writing, although my subject matter has evolved beyond insects! I am truly in love with words and with weaving them together to create beauty, appreciation, poignancy, and depth. I do not write for myself; I find peace and value in sharing my love of words with others. Most of my poetry is about my family, and I have actually never previously written about FA. The experience, in itself, was beautiful, in that the words poured from me. Even though FA makes typing difficult, I will not stop sharing. Please enjoy!
Robbi
A new day breaks The endless fight begins again We have no choice in the matter Alas, we have never had a choice
We never see the sunrise
As we are always asleep Or longing for sleep, yearning to fall Cruel is the irony that reduces our energy Beats the life out of it Yet, still, will not allow us to drift easily and naturally to sleep No, not for all of us Only some
We need every morsel of sleep we can consume Every second of rest, of reprise Of peace for our fatigued bodies Like a hearty, home-cooked meal for a manual laborer And we need the restorative food for our souls, alike In order to meet the strains of the new day Demands of the body And challenges of the spirit Relentless destruction that becomes subtly worse over time
More than simply “Our fingers won’t do this” or “Our legs won’t do that” Deeper, more insidious than meets the eye Our lives are not what we had hoped The summation after time goes by Of assessing the collective damage After years of doing the best we can and making the most of what we have Trying to find beauty in losing independence
Of doctors who cannot stop the disease They can only treat the symptoms And observe the gradual, creeping destruction Our bodies fall prey to this slow-moving predator
The ravenous yet unhurried beast we call Friedreich’s Ataxia.