Edda went to the dentist yesterday and we got a good report! This is not always true because our attention to her oral hygiene has waxed and waned throughout the years. We try to go every three months as a reminder to keep up with teeth brushing and flossing – Jeremy and I do it together most nights as this is the way to keep us both accountable and invested in the toothbrushing. The dentist (who is a pediatric dentist and has a space room we do our treatments in) is kind and is allowing us to stay at her practice as Edda is an adult now and should move on to grown up things. I’m happy we get to keep a little bit of pediatric services in our repertoire. Edda’s wheelchair is falling apart and so now I need to find a wheelchair vendor for adults because we’ve been going to a branch of Children’s Hospital to order all our wheelchairs.
How hard it is to grow up and to grow old! Everyday, I’m bowled over with sadness and longing – for all the people I’ve loved and have been part of me and continue to be so, but who may no longer be here on this Earth. How tender the heart can be and how it can be overcome with despair even in the midst of all the fortunate things that surround me. Everyday is a day to try again and to try and remember.
Edda graduates soon (next Monday to be exact) and I find myself reflecting on her, us, our family, our life together today. I’m so proud of our little family – when Edda was diagnosed at 2, I really didn’t think we’d make it (whatever that means), but here we are, almost 20 years later, still together, still laughing, still crying, still muddling through. It wasn’t quite what I imagined it would be on our wedding day, but no one really lives out whatever they believe on their wedding day. I feel so lucky to have matched well with Jeremy and my kids, who , in their own ways, are well matched to me.
I’m grateful for Mont. Co. Public Schools for pulling their weight over and over again – not only for finely educating me and my brother, but now, also my children. Vince, in the regular way, and Edda in the special needs way. They went above and beyond for both children, but we are especially grateful for all the special needs teams that taught and cared for Edda for many, many years. All very dedicated and hard working professionals who deserve all the credit.
Grateful for the many years of after-school camp activities that was paid for by the state – Celebrate Ability up to the pandemic and then, most appreciatively Renoxx who picked up (heroically) after the pandemic.
And then, all our in-home caregivers…I hope I can remember them all – Yvonne, Eliana, Denise, Se-Hyun, Nat, Keyla, Ning, Kitachi, Isabella, Adriana, Tri, and Ginny, many of them still friends and so much love and care to Edda and to us as well. To have a disabled kid and having help in the house means that you are always sharing your life and your house with other people and it has it’s challenges, but also brings the world to us. We’ve been very, very lucky.
Also, to her summer camp program at JCC which has had the same director the entire time – countless high schoolers who’ve been Edda’s camp counselors over the years – now really, I won’t be able to remember their names at all, all who made Edda’s summers fun and full of swimming!
We are settling into June here, a big month! Edda graduates from MCPS, a lot of her services end – her aftercare and the funding with pays for Ginny and Eliana. And then we transfer over to new programs and funding sources. She’s spending summer at camp – her last year at JCC.
I’m still loving my Stanley cup and here’s Felix showing how well it matches his sweatshirt.
Look, my hydrangeas are blooming this year. I have no idea – they have not really bloomed in years and this year, for whatever, reason, they are exploding with color and blooms.
A nice, lovely weekend with Jeremy back in the fold. I had a great day on Saturday – Edda and I had the house to ourselves and I baked, lifted, cooked, bathed, guitared and laundered while waiting for Jeremy to come home. I went at 5:30 pm to game night at church which was filled with flowers for the ordination the next day.
This time, at this potluck, the food was the opposite direction than on Wed night, too much for the folks that gathered and lots of dishes, and so this time, I got to bring my chick pea salad (so unitaritan) home with me and eat it for the rest of the weekend. Edda came with me and we did the eating part of game night and not really the game part of game night.
I understand there is a “game night” culture that involve interesting, unusual games like this game which involves a small plastic tree that you are supposed to nurture into flowering buds, etc, but I also like playing games like pictionary, spot it and uno. We’ll have to see how it goes with this…game nite…basically, I don’t want to think too hard on game night and I would mostly like to laugh and have a hidden cup of wine in my mug so the kids can’t see that I’m drinking wine.
I drove to dulles and picked up Jeremy and waited in the cell lot and then I found him and he picked me up and swung me around in a circle and I was delighted and happy. I’m super impressed with myself while he was gone this time – the house is always bustling at dinner time, we have Felix and Ginny and company around 6 pm and I cooked dinner every night (obv, Jeremy does almost 100% of the daily cooking in the house) – only once resorting to chicken patties and tater tots (choir night) and managed mostly to keep the house clean and in order. I remember in times past, I would not know what to cook for dinner, but now I lean into things to make everything easier – precut/prewashed veggies, pre marinated meats, and then rice as simple starch. And that’s pretty much it. Also a curry with premade curry sauce, some chicken, carrots/potatoes and onions. Jeremy is really good at prepping the week for me – so I know I still get help. I’m not too bad at this now. I told Jeremy I used to cringe at the extra expense of buying pre-cut pre-washed broccoli, but now I feel like if it can shave off any barrier to actually doing it, it’s ok to pay twice as much for broccoli. (Jeremy, I think, does not buy the preprepared veggies, preferring to do it himself, but he does it for me. – he does help set me up for a good week food-wise). And that no matter how expensive the broccoli is, it’s so much cheaper than doing takeout for 5 people which, I feel like, these days runs into at least $100. So hooray me!
After I dropped Jeremy off at home, I went to see some kitties to do some pet sitting duties. Purrrrr.. purrr…. kitties seem good.
Sunday, I was busy with singing in the morning, singing in the afternoon, mid-day kitty check and the day ended with Sunday night dinner at Riderwood. Gene is in the rehab location so we moved dinner to him. This was takeout – were I ordered a mysterious roll called “caught in a bad romance” which was pretty good.
Megan, the kitty owner, gifted me one of her Stanley cups (she has many) – so I feel so lovingly compensated for petsitting. I’ve never had one of these and now that they are out of style, I have one and enjoying it quite a bit. I can see how people like them. But they are ENORMOUS. But the ice that I put in last night IS STILL THERE. Thermodynamic miracle.
Thursday morning, I went to a Main Street parent connect. Most of these parents have their kids living at Main Street and we chat about various things we hope for for our kids – which, as it turns out, is not that different from what we want from our typical kids. Lots of it is letting go of them, to have them make their own decisions, own mistakes, own lives. Nervous to have them on their own and maybe, not take showers everyday, not get up on time, not live up to their potential. We are a little out of sync with these kiddos – many of them have jobs and live on their own with some support which is not quite what I imagine with Edda, but it’s still nice to gather ’round. I’m so impressed with these parents! it’s not easy, but we all muddle through.
I’ve been talking to Vince lots these past few weeks, he’s nervous waiting for results of a big exam. But he sounded good last night, he’s very busy at work, doing work stuff – which takes his mind off of the anxiety of the test results. He accidentally, on the phone, called Edda Elka (which I do all the time) and then he mentioned the time he called me Google instead of Mom. Perhaps this was the height of the pandemic when his Google home assistant was his best friend, so he called out “Hey Google” 17 times a day, and hence, my name “mom” was replaced by “google”. There you go, the internet overlords have completely taken over.
Jeremy’s coming home tonight (Saturday) and I made it through the week in a mostly good mood – though, man, still moody at some point. On Thursday, there was a team effort to help me make it to choir practice – there are only two practices left in the season – and since they are the only time I really practice and, honestly, there are three new pieces every two weeks, so it goes FAST and I need the rehearsal time and I like seeing my friends. We had a fast dinner at home, then Felix and I headed over to church at 7 pm and Ginny gave Edda a shower at home and then brought her over at 8 pm and then I brought Edda down to the childcare room where Felix was working and put her in the middle of a bunch of elementary school kids. It was fine and I got to sing and Edda was mostly happy and the other kids were curious and fine and grateful (I guess) for the turn to TV watching for the last hour of the session. Sorry, these photos are terrible, but I’m trying to figure photos out again.
Josh is our intrepid choir director – so unbelievably talented, but a little uptight and anxious. I think we’ve relaxed him a bit over time. We are a small, but mighty motley crew.
As Jeremy’s out of town, I like to suspend lots of activities and just concentrate on running the house, but a few friends were going to this church potluck on Wed night, so I was like what the hell. I’ll go and bring the entire crew. And so we all went, me, Edda, Felix, Ginny and Joab.
I spent part of the afternoon making a baked ziti and some cookies (the blue tray in the corner). I was a little worried that the baked ziti was going to be ignored, but it turned out – that the potluck was heavy on dessert and very light on main courses, so…the ziti got demolished and then cookies did not. If I’m going to show up to potlucks and provide the main course, I need to think of how to make it less carb-y. I’ll figure it out. I should have brought a green salad. Oh well.
We tried to stay for the vesper service, but…I literally have no idea, Edda waits for it to be completely quiet before she starts vocalizing very, very loudly. She’s quiet during the meal, she’s quiet during the car ride, she’s quiet during transitions, but somehow during sermon – she’s like AMEN AMEN AMEN AMEN (well not like that, but something like that.)
I had a playdate with my friend Claudinna and her dog Carly (or Carlie – I did not clarify the spelling of the name) and we spent the morning chatting and watching the doggies play. Elka, poor deprived dog that she is, does not have a fenced yard, so luxuriated in her new friend’s fenced yard and tumbled and rolled (and pooped). Apparently Carly does not poop in her own backyard. She poops only on walks.
Carly taught Elka how to use a doggie door (Elka barely fit through- and Elka does not like to push things with her nose, but she managed somehow).
We tried this tea that Nat brought from Paris – it smelled so good, but has caffeine, so I knew I had to try it in the morning. The tea smelled better than it tasted.
Claudinna is about to drive across the country to a cabin with no wifi and you can only get there by canoe. And she’s going to do it with the pop up camper which I happily got to help her pop up. Lots of fun to play with other people’s toys.
I have no photos – so you just get a photo of the Vice President’s motorcade – Jeremy was in DC on Thursday to save the world. He’s doing much better these days – he’s so busy at work doing things that are important and moving fast. He’s going to be traveling a bunch in the next few months, we are BUSY.
I’m feeling good. After months of feeling really bad (mostly mentally, but the last week physically), the blue mood has lifted (fingers crossed). Hopefully, I’ll blog more. We’ll see, I feel like photos are the cornerstone of the blog and I haven’t been in the mood to take photos. I have no idea why the mood lifted – when I was younger, I was sure it was due to an actual circumstance and now I think it has to do with nothing at all, just that for whatever reason, the sun came out (metaphorically) and shone down on my mood and now here I am. Hopefully it’ll hang around for a while.
I have most of the day here at the house with only me and Edda which is glorious. Felix is off working as a lifeguard at the local pool (11 hour shift!), Jeremy is on a long bike ride, Eliana – Edda’s usual weekend caregiver – is out of town for a few weeks, so she’s not here. Our house is large, but we run it hard and it’s almost constantly occupied with at least two people, but most nights up to six at dinner time. Everyone has their own energy which makes it both fun and tiring. I love being alone. But I also love being in a full house. I want them both! Only when you have both can you appreciate them. Just like the moods – you want to have the entire range of emotions.
Yesterday, we drove about 90 minutes to my parents undeveloped plot of land in Pennsylvania where they are harvesting some trees from the property and my parents (who are on the west coast for the season) wanted us to talk to the contractors for a bit. The main contact for this project is Amish and has no cell phone, so it’s a bit tricky to get in touch with him, but possible in a 1990s kind of way with voicemail – he has a landline. Why a landline, but not a cell phone? Dunno. The world continues to confuse me. Why a landline, large machinery and an entire wood milling operation and no cell phone? Again – have absolutely no idea. To me, it’s like, I’ll eat the round pasta, the curly pasty, but absolutely not the long, string-y pasta (this, by the way (in a tender and completely not obstinate way) is Jeremy. and perhaps Vince is the exact opposite (I want to repeat, both are flexible, but have strong-ish preferences)). But again, I’ll totally and happily make you the round pasta. Round pasta!
We were not sure if we were going to bring Elka – is it worth a three hour trip for 15 minutes exploring the muddy woods? In Elka’s mind – yes. Totally worth the trip. She was delighted and muddy and got prickles in her paw that needed attending to.
I’ve been wrestling with a cold that I got from Edda the past few days. I’m OK in the morning (usually), but then get very worn out at 3 pm and want to nap the rest of the day, which I often do.
I leave you with some photos of this weekend’s cupcake baking adventure. These did not turn out very well – a little dry, but they still got eaten, which I guess is fine.
