Category: SMA Posts

{SQT} I Don’t Know If I Can Handle Any More Good News

1. The big news in these parts is that the boys are finally getting Spinraza! via GIPHY The hospital scheduler was not prepared for my display of emotion. ***RING*** me: (sees CHOP on the caller ID, gets hopes so damn high) Hello?!?!? scheduler: Yes, can I speak to the parent or guardian of Fulton Mantoan? Read More

NFP And Genetic Disorder

Next week is Natural Family Planning (NFP) Awareness Week. I do not normally write about NFP because I would prefer to keep that aspect of my marriage private, as would my husband. However, based on the emails I’ve been getting, I feel there is a need for an NFP post to be written for parents Read More

{SQT}Breaking the Law or Enjoying Time Alone With My Husband

1. Last Saturday, I drove the older three children to Lancaster, PA to spend the week with my parents. They were excited, my mom was excited, and even my dad was slightly enthusiastic to teach them gun safety and drive them through his hometown. The next day Tony and I took Teddy and Fulton to Read More

{SQT} A Treatment Has Arrived

Lots of excitement this week, plus I saw my shadow getting out of bed this morning so I declare winter over. My shadow, my rules. Moving on to some quick ones. 1. I sent my oldest two on a bus to Washington, DC last Friday for the annual March for Life. The rest of us Read More

I Am Not Exceptional, And So Can You

This didn’t start out as a special needs blog. In fact, I still don’t think of it that way, though lately it’s been a running theme. But a few years back, I decided to open up more about that aspect of our family’s life. I thought by sharing a bit more on the blog, I Read More

How Can We Keep Our Faith When Bad Things Happen To Our Children?

My final post regarding special needs parenting is inspired from a status another SMA parent posted on Facebook a few months ago. This father was very open about his struggles to maintain his faith. He was mentally keeping track of two columns, and the column for tossing aside what little Christian faith he had left, contained the Read More

The Sadness We Bring To A Diagnosis Should Not Become Our Child’s

I remember the first time Fulton asked me if he would be able to walk when he was an adult. I was getting him ready for bed, when BAM I was hit between the eyes with his innocent question. I remember answering him in a matter of fact way,  “No, you’ll always need a wheelchair.”, Read More

What To Do When Your Child Won’t Stop Staring At A Person In A Wheelchair

It happened every time I took my family out in public; stares, open mouths, finger pointing, awkward conversations and personal questions. And then my fourth, and soon fifth, children added their wheelchairs to the large family traveling circus and things got even worse. I’m hardly an expert in how to properly act around handicap people, Read More

I’m a Special Needs Mom, and This is How I Pray

I know I said I’d be writing about this stuff in August, but, this was a slow week and when inspiration strikes, you gotta go with it. When I get emails from other special needs parents they often mention how alone they feel. Many times, I’m the only other person they know raising a child Read More

Fulton’s First Holy Communion

Saturday morning, we all woke up early and I think the excitement was contagious.   A photo posted by Kelly Mantoan (@kellymantoan) on Apr 30, 2016 at 5:50am PDT Like many second graders this spring, Fulton Ambrose received his First Holy Communion at a morning Mass surrounded by a packed sanctuary of friends and family. Read More

{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

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