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The importance of newborn screening for SMA

Rory and Carolyn met in seminary, fell in love, and got married. They decided to hold off on starting their own family while they settled into their first jobs in North Dakota. After a few years, they moved to Minnesota, where Rory accepted a job as a minister, and Carolyn enrolled in a hospital chaplain residency program. At the time, they did not know how important the decision to move would be for their future family. When they moved, neither North Dakota nor Minnesota had SMA on their newborn screening panel. It wasn’t until March 2018 that Minnesota adopted and implemented newborn screening for SMA, and then several months later, in 2018, Rory and Carolyn’s only son Edan was born.

This topic has 1 reply, 1 voice, and was last updated 7 months, 1 week ago by Alyssa Silva.

  • Author
    • #22380
      Kevin Schaefer

      Hey everyone! Hope you all had a great Valentine’s Day weekend, whether you’re in a relationship or not.

      For this week’s motivational post, I want to talk about the concept of living intentionally. You hear people talk about “living your best life” all the time, mostly in some savvy, social media fashion. Often though, this phrase is used in an artificial way, without any real substance. It’s like we reduce the concept of a person’s “best life” to just a checklist: a good job, marriage, a nice house, luxurious vacations, etc. While there’s nothing wrong with these things, I don’t think any of them are necessary for someone to lead a fulfilling life. Yet, we put so much societal pressure on attaining these things, and we also incorporate a timetable into the mix. Be married by 25, have kids by age 30, get a promotion at work shortly after.

      Those of us who live with SMA often have different things on our minds. These things include: managing caregivers, taking care of our health, having a work/life balance, and getting some exercise. We have a lot of goals and needs to focus on, and it’s ok if our objectives don’t line up with societal expectations. This goes for anyone. Just because you or me might have different goals and are at different stages in life than others, we can still live intentionally.

      This past weekend, I had a great Valentine’s Day weekend, even though I’m not in a relationship. I hung out with my Dad at an indie bookstore, went to church with my family, and went to a show with some friends last night. I ate great food, read books, and watched movies.

      And hey, I still had some stomach issues on Saturday night. Still, when I’m living intentionally and with passion, I find it easier to deal with life’s challenges.

      What’s something you do to live intentionally? Or, what’s something you can do to live intentionally?


    • #22398
      Alyssa Silva

      This is such an awesome topic. I can’t speak on behalf of everyone living with SMA, but I know for me personally I sometimes struggle with the so-called rat race of societal expectations.

      I’m turning 30 in October, and last week I had my first “crisis” about entering a new decade and feeling like I’m falling behind. And after a lot of freaking out, I had to remind myself of something: Nothing in life ever comes easy when SMA is involved. But that doesn’t mean things WON’T ever happen for me. I just have to take a different, sometimes longer, route than the average person.

      So, for me, living intentionally means living in that truth— and not the expectations society has predetermined. It means accepting the deck of cards I’ve been dealt and learning how to play the hand. A couple of ways I accomplish this is by training myself to focus on the present moment, incorporate things that bring me joy into my daily routine, and doing social media detoxes.

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