Thoughts on life, disability, and the power of connection.

PURA 0

Receiving a Rare Diagnosis

You met Sarah when she wrote this beautiful poem about our PURA gathering. Now here she is again telling the story of her daughter receiving her PURA diagnosis. One year ago today, my life changed. Alvie was two weeks old. Ryan was back at work and Audrey was at the sitter’s. Alvie was sleeping in my arms after nursing. It was the middle of the afternoon and my phone buzzed. I didn’t know the number...

image1 0

Meet Anthony – The Face of Resilience

Anthony’s story as told by his mom Elizabeth: Our baby boy, Anthony just turned 1. He just started rolling over and is trying to sit up. There was a time when he was a newborn when we didn’t know if we would ever see this. These are huge milestones for him. This is because he was diagnosed with Pura Syndrome. He has sleep apena and low muscle tone so he has a tracheostomy to help...

PURa 14 0

My PURA Gene Family – In Pictures

The quick and dirty – Aidan lived without a diagnosis for 13 years. Last year we found out he has two mutations on his PURA gene. Shortly after that we started meeting other families online with the same diagnosis. The longer version is here and the poetic version is here. In May we gathered in person. It was incredible in so many ways. Here’s the story in pictures (all the good pictures credit to Rick Allen) All...

PURA 0

My PURA Gene Family – In Poetry

I’m very excited to introduce you to a fellow PURA mom. This is Sarah, mom of the adorable Audrey and Alvie. Here is her reflection of our get together in May.     I am at the PURA Conference in Connecticut. I am here. I am here for you but I am also here for me. I am here to breathe. To take breaths. I n   a n d   o u t. Instead...

PURa 53 0

My PURA Gene Family – In Words

My son Aidan was born with an undiagnosed disability and remained undiagnosed for 13 years. It came as a total shock to us that there was even such a category as “undiagnosed”, that doctors sometimes really don’t have the answer. So we lived for years with more questions than answers, at first fighting hard to find them, and then relaxing into the hopeful possibilities of each day. At times I’ve felt frustrated and isolated by...

blue sky point 8

My One Regret

I have few regrets about the choices I’ve made raising Aidan. It’s been an intense lesson in winging it; gathering as much information as possible, filtering it through layers of emotion, and making the best decision I could at any given moment. I don’t regret putting in and then taking out Aidan’s feeding tube. I don’t regret pumping breatmilk for only six short weeks while taking care of my toddler and being separated from my...

FFT 0

Food for Thought

Food for Thought – July 13, 2015 The Disabilitini Now, I’m all for disability pride. I like to think of myself as a bit of an advocate, not just for my son but for the rights of people with disabilities in general. I want to end the stigma. I want to change the conversation. I want to bridge the gap between them and us. But also, I want a mother flipping cocktail. 5 Ways Able-Bodied People Can...

2

The Making of a Man

I’m parenting in a different stage right now. Aidan will always require lots of hands on care and attention. But for the moment I’m focused on the making of a man. I won’t say that Liam has been set aside all these years as we’ve been so engrossed with Aidan’s care, because I don’t believe he has been. Suddenly, though, the time of Liam’s leaving feels too close. Sure, I’ve still got two years but...

Glennon sister 0

Meeting Glennon

So I met Glennon from Momastery last week with my sister. We went to Boston to hear her speak. She was fabulous – animated, funny, passionate, honest. She said her sister is the boss of her. Me too. She said people were confused by the name of her blog. Me too. She said when she boldy started telling the truth about her life (anxiety, pain, addiction), people said me too. Me too (with different specifics). Glennon...

fs square thumbnail 5 0

Why I’m Not Writing

Crash Jewelry on the floor Bang Drawers rattled open Boom Books scattered Independent Mobility is exhausting. Laundry, dishes, chaos everywhere. Drawing my circle a little tighter these days. College tours and first days of work for Liam. Driving and destruction for Aidan Lack of schedule, motivation and parenting skills for me. I’m on the couch waiting for summer school to begin.