{SQT} From Home


Seven Quick Takes / Friday, March 22nd, 2019

Time for an old-fashioned Seven Quick Takes post. Just in case you need reminding, that means seven quick blurbs that don’t require a whole blog post dedicated to themselves. Nowadays, most of these get shared on Facebook, or Instagram, or the latest social media outlet I see scary warnings about. But today, I’m lumping them together here like it’s 2012 or something.

1 The boys got another dose of Spinraza on Monday. Honestly, I’ve lost count; I believe this is their eighth or ninth doses. People still ask if I see a difference in their strength. Its hard to say. After the loading dose period (four doses given in quick succession), we noticed huge gains. Then, it became more subtle. But in our last visit to CHOP, the OT and I both noticed major improvements in upper body function and use of their hands, so it’s still working, even if it’s sometimes hard to see on a day to day basis. It’s easy to forget that SMA is a degenerative disease meaning kids are supposed to get weaker over time. Even if Fulton and Teddy don’t make huge strength gains the fact that they’re not getting weaker is HUGE.

2 In July, Fulton received a brand new Quantum power wheelchair. Recently, Teddy got his new Quantum chair. Aside from making some adjustments for comfort, it’s nice to not be calling the repair shop on a regular basis because something is broken, not working, or on the verge of falling off. Certainly each chair has it’s quirks, no technology is perfect, but both boys can now do things like elevate their seats, raise their legs, recline straight back, drive up to 5 m.p.h. and change the volume of their horn so it’s super loud. Each chair weights about 450 lbs so, no, we can’t just lift it over a couple steps so my boys can come inside but thanks for offering.

3 The MDA Shamrock campaign kicked off this month and long time readers will remember #wheresfulton and this familiar face.

While Teddy was not picked to be on the Shamrock, his photo is being used in other promotional material, including the national MDA Facebook page’s profile picture. Fulton wasn’t excited to be featured, but Teddy is all about that poster child notoriety.

4 I finished Leo Tolstoy’s ‘War and Peace’. It only took me 284,593,094,329 months…or at least it felt like it. While I loved the characters and their relationships on and off the battlefield, there was a lot of Tolstoy’s own lengthy discourses about the nature of wars and history and who causes what and BLAH BLAH BLAH. There was much to love, but so much bored me to tears that it was hard to keep going at times. I can emphatically state that Anna Karenina is my favorite Tolstoy novel thus far without hesitation.

5 Life in our new house is better than expected. When the boys need rolled over at night, I walk across the hall. Guests sleeping in the living room? No need to retreat to our bedroom, we can relax in the basement. Boys driving loudly and screaming in the house? Addie can still take a test in peace in the basement.Guests want to stay up late but Fulton wants to go to bed? Now I can put him to bed and not worry about conversation traveling into his room from the living room or mudroom right outside his doors. The boys have their own bathroom and I can roll their bath chair everywhere from bedside to toilet to shower to anywhere. No additional transfers needed. Do the boys want to take four days to assemble an epic lego set? Now it sits on a dedicated play table in the kitchen and doesn’t take up space on the dining table getting crumbs all over it during meals. I could go on and on, but this house is such a blessing, crazy wallpaper and all. I’ve done minimal updates and decorating because HOMESCHOOLING! and BOOK! and CONFERENCE! and OTHER SPEAKING GIG! but I don’t even care. I don’t look around and see a broken house with problems that need fixed to make it tolerable. Instead I’m enjoying a solid, clean, well maintained home that I can take my time and redecorate.

6 Besides the house itself is the walkability of the town we’re in. So much of what I want or need to do can be found within a short walk. I don’t think most people outside big cities appreciate the ability to walk everywhere and not be dependent on a car for every one of life’s necessities. Moving to a town where we could walk places was more important to us than square footage, and because we didn’t compromise, we’re now able to walk to the local market for forgotten items, or break up our day by walking to the library or Adoration. Tony can walk to the train for work, and any number of great local restaurants are only a few blocks away. Yet, there’s space in our town, and little traffic as the outlying area is all farmland. Neighbors we’ve met tell us to look forward to all the upcoming festivals and activities, including a large Italian festival dedicated to Our Lady of Mount Carmel which includes a procession on July 16. And many families that live here are second, third, or later generations. People don’t want to leave this area and the town pride is contagious. I used to think I’d only be happy in a beach town, but I’ve found everything I’ve wanted except the beach, and these qualities more than makes up for the absence of surf and sand (of course it helps that the shore is an even shorter drive away).

7 Lastly, I have chopped off all my hair (see my updated sidebar picture). While giving bangs a try was fun for awhile, I was DONE with styling and trimming bangs and the rest of my hair was just a huge nuisance during the move so at the first chance I got, I made an appointment and walked to the hair salon. People who’ve known me for a long time will remember my original pixie cut phase back when I married my husband. So this is nothing new for me and I had no qualms about it. The kids were surprised, and while I told Tony in advance, he was also surprised I went back to such a short haircut. I’ve been afraid for a few years now that cutting my hair too short would make me look older, as if keeping my hair longer would get me carded more frequently. But while some people have been kind enough to say how much more I look like my mother, other people have said I look younger so, I’ll go with that! If you’d like to chop your hair off, consult Pinterest, save lots of pictures and then go to a good stylist (not the local beauty school or Great Clips). They will be able to tell you what kind of short cut will look good on you and properly bestow said cut upon your crown. And if it sucks? It’s hair. It will grow back. I’ve gotten haircuts I’ve hated and guess what? They didn’t last and I got to try something else. If you want to chop your hair, do it. Please don’t wait for permission or advice from a trusted blogger.

Now link up your own old school Seven Quick Takes (I know that’s what most of you do anyway- thank you!). 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!

5 Replies to “{SQT} From Home”

  1. I am SO GLAD to hear the update on the boys and that they’re getting stronger! How amazing!

    And it sounds like your new house is just right 🙂 What a blessing!

  2. Guilty as charged in the hair department.

    I’m so happy that you can walk so many places! I love the “country” (really just the edge of the ‘burbs) but I would also love to just walk where we needed to go. We only walk to the mail box.

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