Although this isn’t a blog about Spinal Muscular Atrophy and special needs parenting per se, SMA affects every aspect of our lives. I created this page to share Fulton’s and Teddy’s back stories, links to my most recent posts about SMA and special needs parenting, (visible under the SMA Category ), and links to SMA resources.
I have also recently started an apostolate for Catholic parents of special needs children. Please visit this new site, Accepting the Gift, for resources and information to support you in your unique vocation!
For a quick background on this neuromuscular disease I recommend starting with my post Seven Things You Should Know About SMA.
These are some of my top posts about SMA and special needs parenting, plus a link to a book I wrote on how to care for yourself as a special needs mom.
- Tiny Tim and the Blind Boy: Why the Types of Stories We Tell About Disabled People Matter
- A Six Year Journey
- My Moral Dilemna as a Catholic SMA Mom
- Seven People Sticking it to SMA
- The Hard Work of Choosing Joy
- I Am Not Exceptional, And So Can You
- Five Ways Being a Special Needs Mom Has Made Me A Better Person – guest post at Svellerella
- I’m a Special Needs Mom and This is How I Pray
- The Sadness We Bring to a Diagnosis Should Not Become Our Child’s
- How Can We Keep Our Faith When Bad Things Happen to Our Children?
- What to Do When Your Child Won’t Stop Staring at a Person In a Wheelchair
In my forthcoming book, Better Than Okay; Finding Joy As A Special Needs Parent (to be released by Our Sunday Visitor on October 8, 2021) you’ll learn more about my personal journey from despairing special needs parent, to joyful advocate and caregiver, and how you too can find joy in your vocation as a special needs parent. Not a special needs parent? My book will also help friends, family members and parishes learn how to better support the special needs parents in their community.
We have a great devotion to Archbishop Fulton J. Sheen, who was made Venerable on Fulton’s 4th birthday, June 28, 2012. We pray for a miracle through his intercession and eagerly anticipate seeing him declared a saint in our lifetime. We also seek the prayers of Bl. Herman the Cripple. You can read his inspiring story here. He was obviously given his title in a less PC era. For more more information I recommend these websites:
If you are the parent of a child with SMA, or other serious medical condition, feel free to email me with any questions or just to vent. I understand! I’ve been there! It would be my pleasure to correspond with you.