Category: SMA Posts

{SQT} One Stop Shopping for SMA Awareness

Thanks to all the readers, new and old, who have stopped by over the last couple weeks to check out my posts about Spinal Muscular Atrophy and how it affects our family. I asked Facebook if there were any additional questions I should answer and I got one I wasn’t sure how to answer and Read More

The Hard Work of Choosing Joy; A Practical Guide

Despite feeling like I’d written everything I had to say about Spinal Muscular Atrophy, I decided I did  want to add one new post, based on a response I gave to a question on Jennifer Fulwiler’s radio show. She wanted to know how I could choose joy during the darkest times in my life. What Read More

My Moral Dilemma As A Catholic SMA Mom

Living life as a devout Catholic, one who feels that everything the Church teaches applies to your everyday life, is hard. At best, we are misunderstood, our decisions considered backward or misguided. At worst, the world can be unaccepting and hostile towards those who choose to make sacrifices and hard decisions based on matters of Read More

Seven People Sticking It To SMA

Spinal Muscular Atrophy Awareness Month will permeate Seven Quick Takes this week, not with depressing statistics, but, in keeping with yesterday’s theme, by featuring seven individuals who are giving SMA the middle finger. Instead of laying around and being miserable (as society might expect), they are out kicking a$$ in their respective fields and giving Read More

{SMA Awareness Month} A Six Year Journey

I don’t often write too deeply on Spinal Muscular Atrophy around here, but seeing as August is SMA awareness month I thought I would write a bit about my journey since that day, slightly more than six years ago when that acronym first entered our everyday lexicon. This year in particular I’ve reflected more on Read More

I’m Guest Posting Across the Internets

Afternoon readers! Just a heads up that today I’m guest posting at Svellerella about ‘Five Ways Being a Special Needs Mom Has Made Me A Better Person.’  #1 I’ve come to see there’s no such thing as a perfect child, except in that every child is perfect just as they’ve been created. I’ve stopped judging children Read More

The Week of Awesome #MDAcamp

MDA Camp, how do I love thee, let me count the ways! PHOTO DUMP! All images are from the MDA Philadelphia Facebook page. All campers and volunteers sign waivers to allow their photos to be taken and shared publicly. I invite you to like their page so you can view the rest of the photos from their June Read More

{SQT} Gather ’round the Campfire

Who else is swimming in humidity!? I love it! I can’t believe that May is almost over and I haven’t snuck away to the beach yet. Darned extra curriculars! 1. I’ve been scrambling to plan out all the details of our girls camps for next weekend, which rates somewhere between letting my toddler comb my Read More

{SQT} The Respiratory Edition

Happy Easter readers! It was not my intent to take a week off writing. Certainly, I knew celebrating Easter with out-of-town family would delay posting, however, I didn’t expect to spend time at the hospital with Fulton, and as such I’ve been preoccupied.  Thankfully, he’s doing well, but you’ll have to tolerate seven takes all about Read More

Seven Things To Do When A Loved One’s Child Receives A Life Changing Medical Diagnosis

Lately I’ve been receiving a bunch of emails from people facing difficult medical diagnosis’, either of their child or the child of a close friend or family member. First, I’m deeply humbled that these people haven chosen to reach out to me (of all people) to seek advice. I mean, how do they know I’m Read More

Not the Usual Back to School Post

Did you survive your first day back to school? To my public/ private school friends, did you weep tears of joy or relief at sending your growing babies away on the bus? To my homeschooling sisters, did everyone make it through the day without tears??? I only had four of my five cry, so I Read More

Saturday’s Surprise

Looky looky what the little boys got this weekend! Those are two handmade quilts comprised of sixteen cross stitched squares each, all carefully crafted with love by volunteers for Cole’s Quilts. Organized by Linda Sietsma-Zuroff, Cole’s Quilts donates beautiful quilts to children with Spinal Muscular Atrophy. Linda contacted me more than a year ago about Read More

The Power of Asking the Internet Or THANK YOU!

On Monday, I did a post that detailed several different options for transporting a wheelchair dependent friend or family member onto the beach. I wanted to shine the light on the many products that are available for families like mine, and hopefully help those who were unaware such devices existed. One product I highlighted was Read More

1 2 3 4 5