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Time Is Motor Neurons

A father’s perspective: Our journey to finding a treatment

When Quinn, our soon-to-be-born daughter, didn’t make as much movement in the womb as our other 3 children, my wife, Annie, and I thought we had the “chillest” baby in the world. We joked that she was saving up all her energy for when she entered this world kicking and screaming. Quinn was born in August 2018, and she was the most beautiful little girl. Over the first few months, nothing seemed out of the ordinary. In fact, she appeared healthy and had strong upper body strength. But by the time Quinn’s 9-month check-up came around in June, her physical condition started to change.


This topic has 5 replies, 4 voices, and was last updated 5 months, 2 weeks ago by Alyssa Silva.

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    • #21638
      DeAnn R
      Keymaster

      Do you have a favorite band? Last week I got an email that my favorite, Maroon 5, released their 2020 tour dates. I’ve seen them in concert twice. Even scoring Adam’s microphone after sneaking up front at the first concert. So of course I’d love the opportunity to get it signed. In August they’ll be at the Fargodome then at the Xcel Energy Center the next night. Both locations are  equal distance from where I live. About 2 hours away. Time to devise my plan.

      Since Fargo is easier to navigate I thought I’d send out a feeler text to my Mom. After I told her M5 was coming to Fargo in August I got no response. Basically I took that as a no. Pretty sure she thinks seeing them twice was enough. I had to twist my sister’s arm to go to Bruno Mars, so I doubt I could get her to go. My cousin got us to the last Maroon 5 concert, so I can’t ask her again. Being the social butterfly that I am, not, my close college friends all live further away. So, it looks like I might be sitting this one out unless I meet some adventurous friends somehow.

      How do you guys manage to do fun things that require a bit of travel? Do you count on family? Friends? If you have any ideas on how I can get there (and back) let me know! My last hope is that Maroon 5 is taking their tour bus from Fargo to the Xcel and for some reason the bus breaks down halfway there.
      They get stranded and have to do the concert in my backyard. I could even arrange the concert to be lakeside. Hey, a girl can dream!

    • #21719
      Halsey Blocher
      Participant

      My family is very tight knit so usually if one of us wants to do something, we all tag along or work together to make it happen. I hope you find away to get there! I especially hope your backyard concert plan works out!

    • #21721
      Kelly Miller
      Participant

      Luckily for me my husband loves music even more than I do, so he’s always game for traveling adventures to see a concert. Back in the day, before I met him, I had to rely on friends & family much like you. In Jan. 1994, the 28th Super Bowl was being held in my hometown of Atlanta. I managed to snag a free ticket from a friend. It was actually this guy I really had a crush on. He was going, but I surely was not going to ask if I could ride with him. Since I didn’t have any other tickets for someone to go with me, I talked my mom into letting me go by myself. She & my aunt rode the subway train with me to the stadium, then they left me to go inside to the game. Later that night, when it was over, they drove the van to come pick me up. Now remember, this was before cell phones as we know them today, so I was totally on my own. I did make arrangements to meet up with my friend and we hung out a lot of the game, but essentially I couldn’t count that as having gone with someone. To me that was a pretty big adventure!

      Now in my elder age, ha ha, I’m not sure I would want to go by myself. However, if it meant the possibility of seeing Adam Levine from the front row, you can bet I would lotion up my sleeve tattoos, call up Ticketmaster, and start saving for an accessible Uber!

    • #21723
      DeAnn R
      Keymaster

      Halsey, wouldn’t a backyard concert be fun!  My family is typically pretty supportive too.  Sometimes though I have to make concessions. This might be one of those times.  We’ll see though.

    • #21724
      DeAnn R
      Keymaster

      That’s awesome Kelly!  I wouldn’t even attempt a Superbowl venture.  Especially pre-cell phone era.  Maroon 5 actually did the halftime show when it was in Minnesota, but those crowds make me too nervous.  I don’t mind doing things on my own though.  I like the accessible Uber idea. Unfortunately I don’t think there’s many of them where I live.

    • #21727
      Alyssa Silva
      Keymaster

      If someone was able to drop you off, would you consider going alone? I don’t know what it is, but something about going to a show alone has always sounded enticing to me. It’s just you and the music, you know?

      On an unrelated note, I love the way you organized this thread with the pictures! I may have to follow suit.

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