Author: Doris

Friday – quick trip to Philly and back to see my friend Vidya.  Left at 7 am, got home at 10 pm.

I’m up too late!  Both Jeremy and I had evening plans and our regular Thurs caregiver needed to call out, so Nat came over and pinch hit.  Vince cooked his favorite no-parents around dinner – Japanese curry with carrots and potatoes.  I told Nat that I was going to be late coming home and that once Edda was in bed, she could let Vince know that Edda was tucked in and she could head on home because tomorrow is a work day and all, but I came home at 9:15 to find her and Vince watching YouTube videos in Edda’s darkened bedroom.  Then we sat around and chatted for a little while – Vince climbed into Edda bed to snuggle with her as we finished our conversation and finally I had to shoo Nat home…  We all got to go to bed!

Hello loves, I have no pictures of my own surroundings today, so I give you a beautiful day in Chicago.  Jeremy texted these photos of Chicago from his business trip – he gave a keynote speech today to some people around noon and then headed back home to me.  He’s home now which makes me happy.  I always, always feel that when he is away craziness ensues.  Vince is sick and is in full standardized state mandated testing mode and so it’s been tricky keeping him feeling good enough to go through hours of testing everyday though really he is feeling pretty lousy. My side gig job is going crazy with my photo ping-ing all the time with various unsolvable problems related to aging & family members. Edda’s is well, but I’m following up on various insurance snafus and her transitional meeting to HS is next week.  Various other things are happening which make me feel left out, unsure,  rudderless, blah, blah, blah. 

With the arrival of Memorial Day, I moved the houseplants out onto our deck.  One year I moved them out too early when a warm burst of air gave me spring fever and then a cold spell hit and they all suffered terribly all being evolutionarily ill equipped to handle anything below 50F.  So I’ve now implemented a strict summer only deck residency.  Memorial Day to Labor Day.  I take poor care of my houseplants during the winter and the natural light is terrible in the house, so I can actually hear the plants sigh with relief and see each plant cell reinvigorate with regular summer rain and sunlight.  Turgid.  The plants are happily turgid and not flaccid like they are throughout winter.

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My side gig nursing job?  Today was the first day that one of my clients passed away.  I learned first thing this morning and I took it harder than I thought I would.  Threw me off most of the day.

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Jeremy is in Chicago for two days, one night.  He left the house before I woke up this morning.  By lunchtime he was having a deep dish.

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The family got me a new running watch for Mother’s Day.  I have not been running much because I’m still working on my hamstring, but I’m enjoying the watch more than I thought I would.  It’s not just a running watch, it’s a smart watch, so it texts me and counts how many flights of stairs I do in a day. 

It measures how much I sleep.  I average about 7.5 hours a night, I’m trying to nudge it up to 8.  If I want it to be a full 8 hours, I’ll need to have lights out at 9:30.  I think that is impossible.  The one day I made it to 8 hours is the night before the royal wedding when I was having a sleepover at Vickey’s house.  But my watch tells me I was awake at midnight for 20 minutes?  I don’t remember that at all. 

Jeremy’s camera on his phone is better than my phone.  His photo are way nicer than mine. He does send me the links to his photos, but it takes me a while to get them on the blog.  They are time-delayed.  Here’s our newly refinished table.

I think it looks more beautiful than it did before.

One day this past month, we snuck out of the house to get ice cream without Vince.  Shhhhh…..hardly every happens.  Ben & Jerry’s.

Last friday was bike to work day.  They had a to-do in Rockville Town square.  Jeremy rustled Vince up early to get to the festivities.  Both the boys bike to their respective day jobs.  Vince won a pair of socks. 

Vince and I went into the woods today. It was hot and muggy.  Saw a frog. 

Edda slept so well in her couch crib – from 9pm to 6:30am.  When Edda was ready for bed,  we shoved the back of one couch against the other couch to create a little nest so she wouldn’t fall out and I brought all of Edda’s sheets from home so she have a familiar smell & feel.  This way we didn’t have to carry her up/down the stairs for her to sleep.  Vickey – true to form – started watching the wedding at 5 am (she often is up at 5 am on a regular day) in her basement as to not disturb sleeping Edda.  I went to the basement at 6:15, tiptoeing past a sleeping Edda on the first floor.  When Edda woke up, we moved to the first floor.  Vickey and Bert look way more put together than either me or Edda.

Wedding!

I brought over our keyboard because we aren’t using it and Bert has recently shown interest in learning the piano – so I assembled it during lulls in the ceremony.

Vickey cooked so much delicious food and I brought it home to a hungry Vince.  He went straight for the tub of cheeseballs.

Then I went to Nat’s graduation in College Park.  She’s graduating with a degree in accounting.  I realized that I don’t care very much for my own graduation ceremonies, but these graduation ceremonies that I get to go – not quite as a mother figure, but something like an auntie figure – are fun and meaningful to me (even though they are long.  oh so long…) .  When Edda was born, I didn’t realize how many caregivers would become an important part of my life.  I’ve listened to stories about their loves, families, schooling, friends.  I’ve given advice when asked for it, I’ve seen them grow up and change and figure stuff out for themselves and I’m happy to be part of it.  I like thinking that when they tell their life story, there will be a part where they say – and I worked for a year or a couple of years for this family in Maryland and they had this special needs daughter and it was (fill in the blank here).

Congrats!

Thursday night we headed into Bethesda to do a larger family celebration of Bette’s 80th birthday.  This was held at Mon Ami Gabi.  Vince was very excited because they serve steak and we very rarely have beef in the house.  We are a chicken, pork, fish house. 

The famous profiteroles. 

Edda loved her shrimp and polenta.  Recently some nights, she’s been a picky eater and not eating much of her dinner which is very unusual for her.

Jeremy and Christine (talking about Vince).

Friday morning started off very early with kittens.

I headed to Baltimore with Adriana’s family (Adriana is one of Edda’s weekday evening caregivers) to see her graduate summa cum laude from nursing school.  The ceremony was long.

We had lunch near the water where in an unusual move, I ordered at drink at 11 am.  Note: I had no alcohol at 7:30 pm the night before with the steak dinner, but happily ordered a mojito at 11 am with chips and guac.  Must be something about the guac.  Adriana’s family is lovely.  They like to rock climb and were giving me some tips.

Then I headed back home and took a quick nap and then packed up Edda and some stuff and headed to Virginia to meet Vickey’s new guinea hen.

Edda and I are sleeping over to wake up bright and early to celebrate the royal wedding.  We started celebrating by eating pie.

Edda’s first sleepover!  Kind of.  It feels that way.

Karuna came over for dinner, but we couldn’t convince her to join us for the sleepover or the wedding.  Boooo.

An actual Corner Market opened at the little strip mall 0.25 miles from the house!  We are very excited.  I went in there today and bought some fuzzy water.  Jeremy wanted to go after dinner and he bought some salad dressing.  They will also have a pharmacy there.  That’s exciting too!  These are the businesses I patronize at the little strip mall down the street: the vet, the Chinese food place, the Corner Market, the burger place, the ice cream place, the pizza place, the nail place and my dentist.  I think the only places left are the bank and the therapist.  Oh, and maybe the massage place.  I could add those places and then I’d be at 100%.  I love the little strip mall.  I’ve been going since I was a little kid!  There used to be a Safeway there and I remember shopping there as a kid.  My parents used the bank there.

Edda is graduating from middle school this year and transitioning to high school.  They must have taken the big, wide class photo a few weeks ago. I hadn’t heard about it because Edda tells me nothing, but it was just last week when I was rummaging through her backpack that I found the order form for the photo.   I ordered the photo because I like to suffer for no good reason. Now these photos always kind of kill me, a slash across my already broken heart, because no matter how well meaning everyone is, they are always a little off.  A reminder how it wasn’t suppose to be this way.  I’m generally OK with Edda being Edda, but there are moments when I’m taken aback and the breath kind of knocked out of me how much we’ve gone through.  I remember when Edda was first diagnosed and I was wild with grief and fear and anger that I told myself that I would give it five years and reassess the family.  If it was still terrible then, then I would put into action some drastic, irrational, emotional plan.  But we made it past those first five years and then the next five years.  I know that Rett girls know more than they let on, but I actually find much comfort in thinking that Edda doesn’t quite fully know (or at all) what she is missing.  I’m comforted that she is not in pain, she is generally insanely happy and knows that she is loved and loves the things that she gets to do and that (I think) does not constantly yearn for what she does not have.  I constantly yearn for what I do not have.  Somedays I can tamp it down a little and what I do not have is a chocolate chip cookie and other days (though much fewer now more than a decade removed from her diagnosis), especially when it comes to thinking about Edda, I think I’ve lost everything and yearn for all the things that Edda (and I) will never have. So above is her class photo, the only kiddo in a wheelchair, pretty much left center front in the photo.  It would have been nice to find a willing kid to stand next to her and have him or her stand up and help hold her up, but that’s hard to do in middle school.  Below is her elementary school photo which is better because she’s not in her wheelchair and they got her in a regular row of kids, but the two kids sitting next to her are leaning ever so slightly away from her.  I get it, I probably would have done the same thing.  Parents, if you ever want to make another parent’s heart sing, just ask your kid to fling their arm over the special needs kid in a casual, friendly side hug in the class photo and smile wide.  Such a small thing!  But really, really hard to do.

Tonight we had our first family meal on our newly refinished table.  Jeremy has some quibbles about it, some cross-grain sanding marks, some drip marks on the side, some tiny bubbles on the finish.  But I’m like – it’s fantastic!  I love it! Let’s eat!

Vince continues on his unending shoe collection.  One night of babysitting = a new pair of kicks.

My peonies are about to bloom.  But it’s suppose to rain this whole week, so they will bloom and then be pelted down by rain and then they will be gone.