Author: Doris

There are 10,000 beautiful types of usually-illegal-in-the-house snack foods on our dining room table.  Jeremy is carefully packing them in uncrushable plastic protector packages and I’m eating what doesn’t fit.  Wheat thins. Granola bars. M&Ms. Crackers.  Cheez-Its: Jeremy bought the original flavor; I vastly prefer the White Cheddar flavor.  But since the Original is the only flavor in the house, I’m happily tilting the plastic baggie with the crumbs towards my wide open mouth like a 7-year-old.

The boys are going backpacking in the great southwest – 4 days/nights outside in the wilderness.   I reminded Vince to pack some chapstick.

We prepped for me too – some easy dinners:

Jeremy made a week’s worth of Edda’s camp lunch: meat-free & nut-free.

Look at this amazing braid I did this morning!  The trick is to do it right after her shower where I washed her hair with both shampoo and conditioner.

Jeremy’s struggling a little with the prednisone taper.  He feels both well and not well at the same time.  Today is his last dose, hopefully, he’ll feel good next week.  You think your personality is you, but while he was on the oral steroids, he spoke faster and was more decisive.  He had to apologize to someone at work because he couldn’t let them get a word in edgewise.  He also needed much less sleep, he just wasn’t tired.  I hope he got some work done in the middle of the night. His face is better, but still lopsided.

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I still need my regular amount of sleep.  I’m like Goldilocks, too much makes me groggy, too little makes me short tempered.

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Summer is half over.  I mark summer by Edda’s time in camp. It’s a seven week camp and she’s done four now.  Now it’s the last three week session.  I think Edda’s having a good time.  I want Edda to have a good time, but it’s hard to tell which makes it a little hard for me.

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Vince is back from overnight computer camp.  Jeremy went to the Friday afternoon pickup/ceremony.  Six of the kids in this photo are Vince’s friends from school.  He said the best part of camp was the hanging out in a college dorm in the evenings, listening/dancing to music and just doing whatever they wanted.  Eating pizza and hamburgers everyday.

He had a course in 3D printing.

His little masterpieces.  Those chapped lips!  Forgot to pack chapstick.  Who needs chapstick in the summer?  Apparently Vince does.

Edda has a little wound where her armpit meets her back brace.   It was there a few weeks ago, but I thought it had healed.  Maybe it healed and then opened again?  Or maybe it’s been unhealed for a few weeks.  So we went without the back brace last night, today and tonight too.

This morning, I did her braids while re-watching American Beauty.  I loved the movie when it came out, but its revelations are not as shocking now.

The thing I love about giving up the brace is that the snuggling is back.  It makes me so sad that with the back brace, it’s impossible to snuggle Edda to sleep.   Hugging her is like hugging a Terrapin turtle.  But now, while her wound is healing, I get to curl up right next to her and feel her whole daytime stiff body relax as she falls to sleep.

Good night!  See you on the other side.

I think most of my friends think I’m pretty flexible in terms of what to do, where to eat, what to see, where to go and I am – I never really care what the plan is, I can accommodate whatever crazy scheduling logistics when we are still deciding.  It’s only after the plan is set am I upset that we have to deviate from it.  Like today – I had a plan for today which just involved these things: wake up, go for a run, log into work, drop Edda off at camp, come home, work until 6:30 pm – no meetings, no phone calls, make/have dinner, do the night time routine and then go to bed.  This is a very straightforward and simple schedule for me, not pressed for time, everything easy.  But then somehow I get irritated when Jeremy calls at 4:30 pm asking me to drive across town through rush hour Beltway traffic at 5 pm to help him pick up and drop off bikes at the cool hipster bike store we’ve decided to patronize.  Because they are cool and hip, they are a little unpredictable with scheduling and timing and hence Jeremy’s last minute request.  It’s not that I couldn’t do it or that it caused me a big load of hassle, I think it mainly messed with my idea of what the plan was going to be for the day.  I need like a 24 hour lead time to change the plan and I think this was established in my teens when we’d leave messages on phones and expect a replies in a day or so.  I would never survive as a teenager now with last minute texting for meet-ups, it would drive me bonkers.

Jeremy promised a night out on the town for my self-inflicted troubles, we made it to the Parkway Deli, a favorite of the DC Martins, but we’d never been there before.

Edda loves her matzo ball soup.

They have a free pickle bar with beets.   I’m wearing one of Vince’s old shirts that is too small for him.  It’s the Death Star with “epic fail” written on it.  Maybe not the best wardrobe choice, a little too geeky even for me.

My crazy sandwich.   I do eat vegetables – mainly at home, not when I’m out.

Dessert case.

Edda got caught in a rainstorm today.

Nat used our little shower wheelchair to clean Edda up.  woo hoo!

I’ve found out that I usually stand on the right side of Jeremy and that’s his palsied side.  Jeremy’s palsied side doesn’t look too different from his general neutral face (there isn’t real drooping, nor is their drooling) so I can momentarily forget that it’s his frozen face side.  The blinking reflex is also bad on that side, so it makes that side of his face more steadfast and stern than his general neutral face.  So when I talk to him, I glance over at him to pick up facial cues (which you never realize that you are doing, but you do it all the time), and all I get is the feeling that he’s mad or pissed at me – which isn’t true, and I can tell it’s not true because if I stand on his left side, I get a completely different feeling from the same conversation.

Jeremy and Vince are going to backpacking in a week – so we went to Target to pick up food supplies.

Backpacking = lots of snack food.

I loved the newest Star Wars movie, the main character is a girl named Rey, but her action figure is nowhere to be seen.  There is a scene when Maz Kanata tells Rey – “The force – it’s calling to you – just let it in.”  and Rey is going to save the universe.  Sometimes, when I’m having a bad day, I imaging Maz telling me the same thing.  Just let the force help you out, Doris.  You too can overcome the dark side….  All the guys are here, but not the main girl.

Edda laughing – it happens less frequently now, but it happened today…can you hear JT in the background?

Then we went to REI.  We lost a sleeping bag and needed to replace it.  Vince and i goofing around on the sample ground sleeping pad.

Then we dropped Vince off for a week at computer camp @ American University.  This is the last year he’s going to do this – I think now he’s a bit old for this, but he was still very excited.

Rooming with a best buddy….

We went to another burger place for dinner – Burger Tap and Shake.  Five Guys is still better…

Jeremy went out on a 75 (!) mile bike ride today on his new bike.  Edda and I went out to Elevation Burger because I had these old punch cards for free burgers.  I had earned two free burgers because we were frequent customers in the past, but I wasn’t sure they were still running the promotion.   Turns out they had stopped the promotion, but they did give me one free burger and we had a good time.

Elevation burger was one of the first of many burger joints to appear in our neighborhood.  I still love Five Guys the best, then I love Shake Shack.  Elevation Burger makes a great burger, but the fries are lacking.  But even with the subpar fries, Edda and I finished off our order….

Happy girl.  Burger & fries in the tummy.

This is Elana, Edda’s camp counselor.  Headed to her freshman year at Columbia in the fall to study international relations, but spending the summer helping Edda have fun.  Hooray for Elana!  Edda is having the most fun in the pool, which is great to hear.  But Edda can complain too (a lot), but Elana seems to manage it with good cheer.

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Our local durable medical equipment (DME) supplier (not so local actually – it’s located in Alexandria, VA) is so, so, so, so, very, very, very lame at ordering equipment.  But every DRs office, supplier, vendor I call refers us to this DME.  Even Montgomery County Public Schools has a contract with them to supply wheelchairs, adaptive toilets, adaptive seating etc.  But they don’t answer emails, they don’t show up when they say they will, they forget what we ordered, they forget our names and our phone numbers.  Anyways, we put in an order for a bath wheelchair May 11th and have heard nothing since.  I’m not sure if they submitted it to insurance.  I’m not sure if insurance is working on approving it, I don’t know where it is.  Maybe insurance will not approve it, I have no idea the status of anything.

In the meantime, I’ve been giving Edda showers on a simple plastic chair and I’ve been asking our two main caregivers to give Edda showers. Edda now is almost 100 lb and if you think I’m little, you should stand me next to Nat or Kitachi and you will see just how much of a giant I am.  Earlier this week, Edda slipped on the soapy seat in the shower and I couldn’t catch her fast enough.  She was fine, she fell slowly onto her knees, but I yelled downstairs to Jeremy in tears that we needed to forget about insurance paying for the chair and order it ourselves.

And it came – expedited shipping and beautiful!  Just kidding.  It’s not beautiful, but it is excellent for the thing it is suppose to do – which is keep everyone safe and not slipping around like greased pigs.  Using this chair, I can get her undressed in a dry place, wheel her into the shower, soap and rinse her, dry her, and wheel her out of the shower and back into her room.  There is no lifting in the wet/soapy shower.  Fantastic.

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To celebrate Friday, we went to Ben and Jerry’s for ice cream, where I decided that I want my nickname to be Dot.

And I played Pokemon Go on the drive home, where my player name is DorisMartin (bottom left of photo).

I’m sorry!  I’m behind on the comments – Yes!  I gave up on the Goldfinch.  But I found another – Everything I Never Told You – Celeste Ng which I started and almost finished while camping.  It’s done now and my book drought is over.  It was excellent – even though I initially resisted because it’s written by an Asian woman who went to Harvard and I hate Harvard.  Ha ha.  No, I had no idea about the Harvard thing.  I just resisted because the story is about a mixed white/Asian marriage and a dead kid, so I thought I didn’t want to go there.  And I have read All the Light We Cannot See – Anthony Doerr and I had even read before that the Four Seasons in Rome by the same guy while we were in Rome.  Although I liked it enough to finish it, I wasn’t swept away by it or anything – it wouldn’t be the first thing I’d recommend to someone.

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Yesterday – after the camping, Bell’s palsy diagnosis, doctor appointments, blood draws, pharmacy visits, dropping all the kids off at houses and re-coordinating all the boys to meet up again for dinner, working for some moments – Jeremy and I celebrated the 21st anniversary of our first kiss which happened on the steps of the Chemical Engineering Department at Caltech after we saw a terrible art house movie called Safe starring Julianne Moore.

We decided to celebrate by bringing Julianne Moore back into our relationship by watching the current art house movie she’s starring in – Maggie’s Plan:

Then we went to Cava where we had fast casual food quickly and informally.  Here’s to the next 21!

Since Jeremy accrues vacation quicker than I do (mainly because the whole week between Xmas and New Year’s Jeremy’s office is closed and you don’t have to use vacation time for that..), he’s wanted to take time off in the summer to do a dad camp where he takes Vince and a bunch of friends to Catoctin near Camp David for a summer camping adventure.  This is different than scout camp because Jeremy gets to plan the whole thing and be the one in charge.

They left Monday morning, van fully packed, with a plan to come back Wed afternoon.  There was a kink in the plan as late last week, Jeremy got a phone call to do a VIP roundtable thing in the city on Tuesday afternoon, so the amended plan was that I’d take the day off Tuesday and drive up in the morning (& take a kid who couldn’t make it on Monday) and then stay until about 8 pm when Jeremy would come back to camp and I would drive home. This involved some extra coordination of Edda-care – a favor for a late pick up at camp & extra late evening care for Edda…

As we were rushing around Monday morning, Jeremy mentioned that his face felt funny, like he was getting hives (he often gets hives) and that he’d take a Benedryl and he’d be fine…

So I drove up Tuesday to find:

Happy boys in a beautiful setting.  We had the whole place to ourselves.

We fished:

And caught one!

We set fires (but not forest fires):

This took a long time: they didn’t want to use paper, leaves or lighter fluid.  They wanted to build little log cabins or lean-tos out of sticks in the fire pit.  I could feel the kids’ glucose levels just dropping and they were just getting crankier and crankier.   I made them go to the van to get snacks – everyone started eating chips and finally we got the fire started.

As soon as they got a few hot dogs in them, everyone felt better.

Then Jeremy came back to camp after dinner and when he was talking to me, I noticed that he was blinking funny and he said his face was still feeling weird and only on one side, which led us to think he might be having a stroke.  But I remembered it could be Bell’s palsy – so we had to borrow a kid’s cell phone (T-mobile is cheap for a reason, the Martins had no service, but everyone else did) and we went through the differential diagnosis for stroke vs Bell’s palsy.  Bell’s palsy has an inability to wrinkle the forehead on one side whereas stroke patients usually can wrinkle forehead on both sides.  Bell’s palsy also has sound sensitivity which stroke patients do not and Jeremy was having a tough time listening to the dog barking or kids yelling.  Stroke patients usually have weakness in one arm, lack of coordination, headache and dizziness which Jeremy had none of.  So we decided that Jeremy had Bell’s palsy, but we decided he should go home instead of me to be closer to the hospital and also if he needed to call 911, that he wouldn’t abandon 5 boys in the woods.

So I stayed the night with the boys in the cabin which was a little awkward because I’m used to being the mom and barging in on everything and I’m used to parenting a group of kids.  Not a group of almost-men who are changing for swimming or just horsing around — so I’d walk in holding a towel, goggles, snacks and someone would yell – don’t turn around or I’d hear the tail end of a joke and then nothing….  I don’t want to portray that they didn’t want me around – they were very nice to me and laughed at my own attempt at humor and such things, but they really are grown up in a new and interesting way.

And, yes, Jeremy went to the doctor today and has Bell’s palsy – a course of antivirals, a course of steroids and follow up with a neurologist – though we hate neurologists.