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Showing posts from May, 2020

May 31, 2020

One of my favorite things in the whole world is seeing Shannon laugh. It's contagious. It makes me happy. You can't see her laugh and not feel joy. I have seen a lot of it these past several months, which is....surprising. I don't know how I would act if I were in Shannon's place, but I'm pretty sure I wouldn't be as joyful as she has been. I am very grateful that she HAS been joyful, because this would all be so much more difficult if she were crying all the time. I know she's been hurting, but it's so much harder to keep it together. So blessings all around that we can all find joy even through this very trying time. Today was a GREAT day for Shannon. She was woken up for her medical stuff at 6am, and again around 9am (not that she recalls either) and then really woke up at Noon. After eating something, she headed BY HERSELF WITH HER GREEN TAG ON THE WHEELCHAIR (she's a grown up now, remember the get our of jail card?) to the art room. She told...

May 30, 2020

It was a carefree watch movies all day kind of day for Shannon. That sounds fantastic, doesn't it? Shannon has a love-hate relationship with the weekend. She loves not having to work hard, but there is literally nothing going on to entertain her, and her room is beyond boring at this point. FOUR more days and then she gets to come home!! Shannon did have Rec Therapy today, and they played a game. Nothing on the docket for tomorrow. On the home front, we are chipping away at things. Nothing major was completed today- just more flooring, more drywall, baseboards, etc. Rachael and Jake put together the cabinets for the bathroom and the desk we are using for Shannon's bedroom kitchenette. I bought paint to repaint the closetmaid set we bought off FB marketplace. After a trial run, I was on the fence about proceeding. Rachael said we'd do whatever I wanted. I couldn't decide. We flipped a coin, and it said paint. Then we let the 5 year old at our house decide, and he s...

May 29, 2020

These two are twins. Ask anyone. Ryen, on the left, looks just like Shannon- even though Ryen was born 6 years earlier than Shannon was. They don't love it, but they are used to hearing it. One Sunday at church, someone came up to Shannon and asked something along the lines of "Are things going well for you and the twins at home?" Shannon responded with something like "Ya, and my SISTER who HAD twins, is doing well too". :) It will be easier to tell them apart now, since Shannon will be popping wheelies in the the church hallway, and Ryen will be chasing three rowdy boys around. They will surely suffer from mistaken identity a lot less. It's the little things... Today I spent the day with this girl again. I scored super brownie-undying love points when I walked in with a bag of Monster's in the flavors Shannon asked for. She drinks them daily to keep her energy and blood pressure up. We were joking around about how she can claim them as prescription ...

May 28, 2020

See...this is what that little princess really prefers. Something active, outgoing, and even a bit dangerous. Shannon had a very short lived lacrosse career. In part, because there was a lot going on the next season (cough, Krisha) and in part because she didn't like playing it as much as she remembers liking to play it. She doesn't like organized sports (ask *all* of PE teachers) But as she got older, it was all about the kayaking, rafting, paintball, nerf wars, bike riding, and when she turned 18, sky diving. I wish I had her video to show you. She's adventurous. Most of the time she's doing other things. She LOVES to read, listen to music, art, etc. I, however, would always choose to be on her paintball team, instead of the opposing one. She plays to the death. When Shannon has a better handle on using her wheelchair, and has more strength, she is going to be killing it again, at whatever she decides to put her mind to. She's already been killing it with all th...

May 27, 2020

In a little town in a far off land lived a tiny girl who happened to be a princess. She was well loved by all of her princess friends from neighboring kingdoms. They would gather for games and to frolic in the meadow together. But deep inside that tiny princess, was a small wild streak. The kind of wild streak that would send other princesses falling glass slippered heels over heads as they bounded upside down for doing such dastardly deeds as steeling imaginary cookies, or standing in a straight line that was begging to be toppled domino style. But somehow, that tiny princess grew into a beautiful young lady who changed her wild ways and became all things pleasant and good in the world.  Okay, story time is over.  Shannon used to love being all cutesy princess looking when she was a small fry. BUT. That wasn't cute, that was cool. She grew out of it. As you can see from this humble photo here. It was an HONOR to do her nails for her, again ;) Just another famil...

May 26, 2020

Once upon a time, Shannon's dad decided we needed a shaved ice machine. Not one of those little things that you put on your counter that puts out a cup of ice shreds. Nope. A commercial shaved ice machine. When we lived in Maryland, we fell in love with Snoballs. If you haven't had a Snoball, you probably also have no idea what I'm talking about when I say Wawa. Anyway. It's shaved ice with the flavorings, plus stuff. Marshmallow cream, ice cream, nerds, gummy bears, chocolate sauce, you name it; it can be on it. When we moved to PA, there wasn't one located just down the street, and Lancer was also trying to be the coolest grandpa ever, so he bought it. And if you give a Lancer a shaved ice machine, he's gonna want 16 gallons of flavoring to go with it. ('go big or go home' much?) Each year we hold our Memorial Day backyard cookout (a cook out is a barbecue...see, I'm educating those of you NOT from the east coast. You're welcome), and the yea...

May 25, 2020

Today was a holiday, no therapists around to do anything with Shannon. It's been pretty boring, again. She just hung out in her room. She FaceTimed with us for a while, and her plans were to just watch a movie. It's a nice break before her busy week. We have three days of family training this week, which means LOTS of work for Shannon. It's always a mixed bag of feelings- family training. We love to see her, we need to learn how to help her when she's home, but she is always doing way more work when we are there; so I feel bad being there. It's a hard adjustment, these sudden changes in our lives, but I know things will work out and we, especially Shannon, will find a new normal and be happy with the outcome. It may not be how we thought things would be, but I am certain once we adjust to things, Shannon will see the beauty in all of it.  There are only 9 days left before Shannon comes home. She CANNOT WAIT! We can't wait either! And we aren't panick...

May 24, 2020

These two have always been so cute together. Sure, Jake will hate me saying that now. Now that he's a man(ish), he doesn't do cute. Shannon, well she hate's anything that's cute. One of her nurses told her that her new shoes were cute, and she corrected her. They weren't cute, they were cool. Cool. So...these two are so cool together. (now you should both be happy) Today was such a great day, because THESE two got to be together!! Jake's been dying to see Shannon! He's been helping us get ready for Shannon to come home, but it's so much more fun to BE with Shannon. Aren't they cute, er, COOL together?!! And you know what is even more cute, er COOL? These two got to be together!! Family training for "the boys" has begun. They don't have as much to learn for Shannon's care at home. Mostly, they help with transfers from chair, car, bed, etc. They also learned to pull her up stairs. They will learn to do car transfe...

May 23, 2020

It's been a really boring day. Super boring. A very, very, very, exceptionally boring day. With nothing to do. Not a person to see, except nurses. No leaving the room. No fun therapy. No unfun therapy. (I know. Unfun is not a word.) No brain games or exercises, no family visiting. Just. Boring. What does one do on a boring day? Well, if you were Shannon, and you were home with your siblings, you might do something like this: But since she's not at home, she continued her marathon of this: If you are wondering if I'm referring to Psych or the Cheez-its...yes.  She does have some fun news though!! She doesn't have any kind of bandage on her trach site, because it's officially CLOSED. It's healing quite nicely, and she's adding the scar to her collection of battle wounds that tell the tale of the hardest fight she's fought in her short 20 years.  We had a less exciting day as well, but in a good way. We were supposed to start ...

May 22, 2020

By now you know that if there was one thing to eat for the rest of her life, Shannon would probably choose sandwiches. Turkey is definitely high on the favorite list, but she also loves PBJ. We were filling out her menu today, and I remembered she was craving her dad's french dip sandwiches. She asked my thoughts on an onion soup, and I suggested ordering that and a roast beef sandwich. We will all have to wait until next week to see if she liked it! But tonight, she sent me this: That's a double decker grilled PBJ. I think I need to make one for myself. Today Rachael and I had family training. Also, today is Rachael's 10th wedding anniversary! So it was especially wonderful of her to spend the day training with Shannon. :) She spent the day with us and then headed home to MD to have a relaxing weekend sans kids with her hubster. My daughter Ryen volunteered to watch Rachael's girls. Adding two active girls to her house of 9 month old twin boys and a VERY activ...