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 several I already did. So I thought I would end my awareness blogging for the month with a round up of the best of my SMA posts (cause searching the archives is tedious yo.)
1. The facts about Spinal Muscular Atrophy:
SMA is a motor neuron disease. People with SMA are missing a gene crucial for providing spinal motor neuron cells with a necessary protein. Without that protein voluntary muscles become weak and can atrophy. Voluntary muscles include those used for breathing and swallowing as well as the muscles used for walking, moving your head, or raising your arms. People with SMA become weaker over time, with more and more voluntary muscles being effected. The degree to which the disease progress varies widely.
-Seven Things You Should Know About SMA
2. How can I help a family whose child is diagnosed with SMA or a similar disease?
Understand that even after the shock of the diagnosis goes away, and the family settles into their new normal, there will be tough times. Your friend may seem fine, and things may look great on the outside, but the hardship of the day-to-day is there. Your friend probably doesn’t want to be considered a saint or someone who is “doing it all”. He or she is probably still struggling in many ways. This is where continued prayer and listening is so important. It is an ongoing juggling act to care for a special needs child. Things never stay the same for long. Never assume your friend has it together.
-Seven Things To Do When Your Loved One’s Child Receives a Life Changing Medical Diagnosis
3. What does a day in your life look like?
At home:
After prayers I carry Fulton back to bed. Tony already got his meds and bag of fluid for overnight set up. I hear Tony try to read while I hook Fulton up to his machines, but Teddy isn’t a fan of Lord of the Rings. Tony carries Teddy back to bed and takes the older kids upstairs to read. I finish tucking in the younger boys and then sit drinking wine at the computer and kill time on the Terrible Real Estate Photos tumblr while constantly rolling Teddy over. (This is what happens when Teddy naps anymore.) Eventually, I go upstairs, tuck in the older kids and crawl in bed to read. I set my alarm for 5 a.m. By 10:15 p.m. a nuclear explosion couldn’t wake me.
4. On vacation:
We’ve also learned that handicap accessible does not always equal power wheelchair accessible. Something as insignificant as a three-inch lip to a curb or doorway can cause all sorts of problems. Poorly marked or hidden handicap entrances, cracked or buckled sidewalks riddled with tree roots, people illegally parking in front of entrance ramps: until you see the world through the eyes of someone like Fulton you don’t realize how inaccessible places really are. We tried to avoid these problems by taking Fulton in his stroller when we were uncertain of accessibility as it’s easier to lift over curbs and bumps.
5. Visiting friends (with tips for welcoming families like mine into your home):
There is never a shortage of friends who are tying to figure out how to help us visit them or get us to participate in an event. However, if you don’t have an accessible home, visiting is just going to be hard. Even if I can set up a ramp, often furniture will crowd a room or the playroom will be in the basement anyway. I don’t want my friends to feel bad. I don’t want to say, no we can’t come it’s too exhausting for me. So I’ve carried Fulton and Teddy up and down steps to follow the kids, carried them into houses where I couldn’t unload my lift, and tried to position them comfortably on sofas when their chairs or strollers can’t make it in the door.
6. This post marked a huge turning point for me as an SMA mom and marked a shift in how I approached the disease here on the blog.Â
It’s been an epiphany and it inspired me to add the SMA page up top and share more of my story. This still isn’t going to be a dedicated SMA blog but now I see the benefit to putting it out there a bit more. Maybe your child doesn’t have SMA but another disability or tragedy that knocked the wind out of you. I get it. I understand that raw emotion, the anger and the pain and I won’t judge you for it.
Eventually you reach a new normal. But it’s the type of normal few people understand. They mistake you for a superhero or saint or something; titles no one is comfortable carrying. And that is why finding friends who can intimately relate to your struggles are so important; they reinforce your normal.
-The Friends I Didn’t Know I Needed
7. And this month’s posts
Being a special needs parent (and an older post on being open to becoming a special needs parent).
Being a Catholic special needs parent.
How I came to choose joy (and how you can too.)
Plus, last week’s seven awesome individuals who just happen to have SMA.
Now you can’t say you haven’t been made aware of SMA! I have dipped, coated and deep fried you in awareness from head to toe! Thanks for putting up with it. Next week, I’ll probably blog about homeschooling, post a lip synch video and rave about whatever book I’m reading. Until then, link up your takes below and be sure to include a link back to this post so your readers can find the rest of the Quick Takes! I look forward to reading your posts!
Loved this, Kelly. My eldest has autism (which comes with different challenges) and I like to click over here for your humor and grace and honesty about raising special needs children.
We’re in Wales right now, and I’ve become so aware, with just the use of a stroller, with how frustrating it must be to live here if you’re in a wheelchair or power chair. The nineteenth century architecture just wasn’t (and isn’t) handicap-friendly.
Awesome post about SMA awareness!
Kelly, you may not be a saint nor superhero, but you are one super mom. You did a great job with these posts. Thanks!
I have been really enjoying all your posts this month, thank you for the awareness!
Ok, so I won’t call you a saint in the making anymore. But truly, there is such wisdom that comes from your own dark nights of the soul. I learn so much about what it is to be a mother and walking toward holiness, even though I don’t understand your “normal.” Thank you for sharing your heart and your world so openly. XOXO
Have you heard of SMAsh SMA? Search it on FB and you will see a link to a College Station, TX mother who is trying to raise awareness. Her 13-year-old son lives with SMA.