Category: SMA Posts

#hospitallife

Last week as I published my Takes, I was convinced that Teddy had turned a corner, and would be back to normal and hopefully back to school by Monday. And then Friday, the exact oppostie happened. His temperature shot up higher than before and his blood oxygen levels fell dangerously low. Tony and I both Read More

‘Accepting the Gift’ in Review

What great weight is lifted off one’s shoulders when a major project finally comes to completion. I spent all of last Sunday walking around and smiling and remarking to Tony, “I’m no longer planning a conference!” Of course on Monday I dove into video editing, and by Wednesday I was making notes for another event, Read More

Advice for Parents Whose Children Are Scheduled for Surgery

We are officially six months out from Fulton’s spinal fusion surgery. While we will be sticking with some of the care methods we adopted during his recovery, life, for the most part, has gone back to normal for him and us. It’s a new normal; the rigidness we feel is his body, not an external Read More

I’m Thankful for Modern Medicine

This week started with a stomach bug at 4:30 a.m. Unfortunately, it continued unabated through most of the day, and when the afflicted’s name is Fulton, that equals a trip to the ER. We struggled with the decision as to which ER to take him to; it was rush hour, do we take him to Read More

How To Buy Gifts For Special Needs Children (+ A Gift Guide)

It’s the time of year when bloggers start gathering all their affiliate links together for epic gift guide posts! You’re guaranteed ideas for parents, children, teens, grandparents and your hair dresser’s dog! You can support small, local, handmade businesses or your favorite international sweat shop! The options are endless!!!! I’d be a fool not to Read More

Why You Should Start A Special Needs Blog

More than six years ago I started what I though would be a humor / homeschooling / Catholic parenting blog. I didn’t share many photos of myself or my kids in those early months, not wanting to let the obvious fact that two of my sons were physically disabled dominate content or conversation. Sure, we Read More

{SQT} The Comforts of Home

We’re home! This week’s Takes are coming to you from the comfort of my favorite couch. 1. Fulton had some lingering GI issues, but we were discharged on Monday, GI issues being something we’re used to dealing with at home anyway. The strong pain medicines came with us, but everyday Fulton has needed a little Read More

{SQT} Fulton’s Spinal Fusion or My Boy’s Bionic Back

Thank you everyone for surrounding Fulton, and our family, in prayer this last week. If you haven’t been following along on social media (Pictures are all on IG.), let me bring you up to speed, and if you have, let me fill in the details for the last couple days. Saturday – I took Fulton Read More

{SQT} Teddy Is Not Happy And How To Get Rid Of Old Artwork

We are less than FIVE DAYS from Fulton’s spinal fusion surgery at Shriner’s in Philly. How have I been passing the time…when I’m not imaging worst case scenarios???? 1. We moved Teddy’s bed out of the downstairs bedroom. The idea was to have Teddy sleep upstairs in Byron’s room. That worked for about three nights Read More

{SQT} August Is The Relaxing Month Of Worry

1. Since being sick earlier in the summer, I started watching ‘Parks and Recreation’. I have not followed a TV show since Tony and I rented seasons of the Sopranos from Blockbuster Video. It’s eating up too much of my time and I’ve made no progress in War and Peace. On the other hand, it’s Read More

How to Teach Your Kids About Kids Like Mine

It’s SMA awareness month! Time to spread some awareness. Some years I’m more motivated than others, and after several years of blogging about SMA and special needs parenting, I sometimes feel like I have nothing new to say. But, while driving in the car craving Sour Patch Kids, I tried to mentally think of any Read More

What Has Helped Me On My Journey As a Special Needs Mom

Yesterday Fulton turned 10. T! E! N! Or as he put it, “I’m all ten fingers now!” Every year in June, I can’t help but reflect on Fulton’s diagnosis and his first birthday (which fell a little over a week after we got the news). Addie was six when Fulton turned one. Having a ten-year Read More

{SQT} School, Spinraza and Some Gift Ideas

Feels like it’s been awhile; how about some old school takes? 1. On Sunday, November 19th we celebrated my mom’s 65th birthday and her retirement from a company she’s worked at for 41 years. She’d planned a big party, with tons of food, and friends and family I hadn’t seen in years. Best comment was Read More

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