Month: July 2016

It is now the last day before the boys get back from NM.  I made it through the week in pretty good cheer, but the last day is always tough for me.  I rely on my boys for steady optimism (Jeremy) and steady socializing (Vincent), without them, I can be a sad hermit.

When I was in high school I, quickly, over about 6-12 months, lost about half of the hairs on my head.  My luxurious head of jet black straight hair dwindled, the diameter of my ponytail got smaller and smaller.  Every shower I saw a large clump of hairs collecting in the drain.  I was/am never (never!) one for caring much about my looks, but this hair loss made me distraught for a long time.  I will not be above admitting that, over the past decade, after letting go the incredibly unreasonable desires I had for Edda (first female president, Olympic gold medalist, savvy billionaire entrepreneur, solo-eureka-cancer-eradicator), the high reasonable desires (high school musical, college degree, nice husband/spouse, fulfilling career, a family of her own), the low reasonable desires (enjoying a joke, telling a secret to a friend, learning Avogadro’s number, baking a cake, taking the dog for a walk) and the things I didn’t even consider desires when I was pregnant (the ability to speak/eat/dress/go to the bathroom by oneself), that I sent up prayers to the powers that be to have it arranged so that she didn’t inherit my hair loss – that at least when people walk up to her, that they can always say – Edda!  You have such beautiful hair!  (Which is what they all say – just so you know.)

But I think the powers that be didn’t hear me – I think Edda is losing her hair.  There have been hairs collecting in the shower drain for a few months now, and today!  Of course today – the day before the boys get home, I really pay attention – I pull on her hair the same way I did when I was 15 and I see the same number of strands pull from her scalp in the same way mine did three decades ago.  And this is what brings me to the ground today – not the scoliosis which is progressing despite the brace, nor the turned out foot that threatens to deform so much and put the ankle bone on the ground, and not the advancing stiffness that pervades her body that makes it hard to bend at the waist to sit in her wheelchair or to lift her arms above her head to put on a shirt or to bring her legs into the footwell of the car – I fixate on the few strands of hair on the bathroom floor.

Summer has peaked, you can taste it in the fading flavor of the berries.

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Boys are back within internet range.  I got some texts today:

Boom.  Back into civilization.

Edda and her new counselor for the third and final session, Elizabeth, at drop off this morning.  Elizabeth is in nursing school!  Very nice.

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It’s been hot here in the DMV – but it broke today with a mf of a summer thunderstorm.

Drenched at camp pickup.

Edda’s painting masterpiece suffered a little.

You know what’s fun?  Being three is fun.  You get to play in the splash pad and have hamburgers and fries for lunch.  I learned both the word butt and butthole in Korean from Bert.

Vickey introduced me to cajun flavored fries with malt vinegar (at my most favorite burger place – Five Guys).  She says it’s like fish and chips.  I said I liked it, but when pressed by Vickey, I admitted that I wouldn’t order them again – I’d have the plain ones and I’d stick with ketchup.

Vickey also introduced me to this new thing – a way to make 100 water balloons in 1 minute.  Each of these balloons have little straws all attached simultaneously to a garden hose connector and when they are full, they pop off the straw and seal with a tiny rubber band.

We got to assemble a Playmobile ambulance which was harder than I remembered when I assembled little toys a decade ago for Vince.  I think it was harder because my eyesight is terrible-er and I didn’t have my glasses within arms length.  Lots of squinting to apply the small stickers in a straight line.

Came complete with an injured “Jeremy”.  Poor guy, luckily it was only a flesh wound and just needed IV fluid, which the ambulance had.  I miss my boys – they don’t often leave for a week together.  I have a slight, irrational fear that they won’t come back and then I’d miss them and then I’d have to do the rest of my life without them.  That would be hard.

Kitachi helps out with Edda on Tues & Thurs nights and Sat. days, she’s been working with Edda since last August – almost a year now.  They went to see Secret Life of Pets on last Saturday with a tub of popcorn and soda.   Tonight was taco tuesday – to which Kitachi said, I love tacos, they are my favorite!  I did not know this, or I would have made tacos on tuesdays earlier.  I was all excited because I had gone out of my way to purchase taco shells that had a flat bottom so you could stand them up and fill them, but alas, many of them had broken in transit.  So we had slightly crumbled tacos on this tuesday.

Quiet day here with just the girls.  Edda’s wound looks good today.  I found some medical sticky tape with some padding to hopefully prevent abrasion against the armpit.

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Home for dinner.

Nat helped with dinner and Edda tonight.

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Vince texted me this rainbow from their drive last night:

Into the wilderness this morning:

Headed to the Gila Wilderness:

Ready for takeoff.

Made it to NM – and Sparky’s – the home of the world famous green chile cheeseburgers.

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.