Category Archives: Poetry

Timelines, Lifelines, and Lifetimes

Posted on December 12, 2022 by melelllan

Today marks three months into the FDA process of the review of Trofinetide, the halfway mark (of course it could always be sooner!). Taking a look at the timeline for NDA priority review, it shows that at this point the … Continue reading →

Posted in Acadia, Death in Rett syndrome, FDA, grief, Poetry, Trail to a Texas Trial, Trofinetide | Tagged | Leave a comment

Holland in October

Posted on October 13, 2021 by melelllan

There’s an essay by Emily Perl Kingsley, “Welcome to Holland”, which is one of the first things recommended to new parents of special needs children to read. And for many, it’s just right. It hits the chords that need to … Continue reading →

Posted in Poetry, Trail to a Texas Trial | Tagged , , | 3 Comments

Rett syndrome Awareness Month #3 A Steeper Hill

Posted on October 3, 2021 by melelllan

This poem still resonates with me. I think the hill is slightly less steep than it was at the beginning, though, and that is such a relief. Just keep on keeping on, we’re going to make it to the top … Continue reading →

Posted in Army of us, boys with Rett syndrome, Poetry, Rett Syndrome, Rett syndrome Awareness, Trail to a Texas Trial | Tagged , , , , , , , , | 2 Comments

A Crystal of Happiness and Hope

Posted on January 23, 2020 by melelllan

There is a poem I love. It serves to remind me that we are all entitled to the “Pursuit of Happiness” but also that you must learn to be content with any pieces you find because, in truth, no one … Continue reading →

Posted in hope, Poetry, Rett Syndrome, Rett syndrome Awareness, Trail to a Texas Trial, Trofinetide, Trofinetide Phase III, Uncategorized | Tagged , | 2 Comments

Poetry is my Pocket Watch

Posted on April 3, 2019 by melelllan

April is Poetry Month. As I have traveled this journey with Katelin, one of the few ways left to be ME was to write, and so I wrote. There were times I wrote on my  lunch break that turned into … Continue reading →

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My Wish to the Stars

Posted on February 18, 2019 by melelllan

Our little community has lost at least 5 girls and one mother to Rett syndrome and FoxG1 since the start of the new year. Facebook is a double edged sword-you watch these children grow, rejoice in new skills or coming … Continue reading →

Posted in Death in Rett syndrome, FoxG1, Poetry, Rett Syndrome, Trail to a Texas Trial, Uncategorized | Leave a comment

Poetry Month: Pain inspired

Posted on April 22, 2017 by melelllan

Many, many years ago, while taking a course in college they gave us this book of poems, rather we BOUGHT this book of poems. And it is my favorite. I still read it from time to time. One of my … Continue reading →

Posted in grief, national poetry month, Poetry, Rett Syndrome, Uncategorized | Tagged , , , , , | 1 Comment