because joy is the goal, not perfection
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.”, …
Continue reading “The Sadness We Bring To A Diagnosis Should Not Become Our Child’s”
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, …
Continue reading “What To Do When Your Child Won’t Stop Staring At A Person In A Wheelchair”
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 …
Continue reading “I’m a Special Needs Mom, and This is How I Pray”
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. …
I love a good day in the life post. It’s been a year since I recorded our homeschool day, and even longer since I did it with more words than photos. When I saw that Simple Homeschool was going to make their recent Day in the LIfe series a Link up, I knew I’d have …
Continue reading “{Simple Homeschool} Another Day In the Life”
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 …
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 …
Our first week back to school following our April break and we’ve all lived to tell the tale. ..not that I want to know what kind of tale the kids will be telling but I’m going to share about my sleep deprivation. Because who wants to jump into school every morning after a restful night’s …
Continue reading “{SQT} Of Course I Assume It’s a Dead Body”
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 …
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 …
Welcome to part four of my sporadic series ‘Life With Fulton’, where I detail the ins and outs of caring for a child, or children, with Spinal Muscular Atrophy. Read previous installments HERE, HERE and HERE. I’m a very social homeschooling mom who lives in a state teeming with homeschooling activities. With Philadelphia only a short drive away, …
Dear person with the handicap placard hanging from your rearview window, I see you’ve pulled into the only handicapped spot by this entrance to the Boardwalk. You feel the need to take this spot despite being healthy enough to get out of your car, change into a wetsuit, grab a surfboard and carry it unassisted …
Continue reading “Handicapped Parking, Apparently Not Just For The Handicapped Anymore”
It’s been one year since a nurse last set foot inside my house. Many times since then, I’ve prayed for the return of nursing care, but according to all insurance guidelines, Fulton is just too healthy to need the assistance. I’ve modified our school days, tried to be consistent in my daily routine and just …