Edda’s last day of school was on Friday. Actually, the school year extends until Tuesday because we had a bunch of make up days, but we had planned a vacation before the days were added, so…our last day was Friday. Elka greets the bus driver and aide everyday, Elka – lucky dog – got a little lovey from the driver Caesar, and loving pets from the aide – Doris!
Then I went to Edda’s school to say goodbye to the teachers, aides and kiddos. Teacher Jackie – she had no septum ring at graduation on Monday, but by friday, she had gone to the piercing shop and now we are septum sisters.
I spent a lot of time with Teacher Pat outside.
Izzy is Edda’s best friend – xoxo.
Then I went to aftercare to say goodbye to the team there. It was an emotional day.
My loves, Edda graduated from high school yesterday and walked across the stage with all the pomp and circumstance that the occasion merited. She graduated from the same high school I did 35 years ago! I didn’t cry! I loved every bit of it, the teachers and the administrators really took care of us – giving us reserved seats so we could see Edda the entire time, the DAR hall was elegant and just the right size. The band played and we all watched Edda march in the line of graduates. She was helped by her teacher, Mr. Pat.
I am so proud of Edda who goes through life with a steady equanimity and grace.
Edda was the only graduate from her special needs class, so after they called her name, we were able to duck from the stage and take photos with her teachers and then take them all out to lunch at the downtown Founding Farmers. The teachers had taken a bus from the school to the graduation and we promised them all lunch and then a ride back to school. So we rented an enormous SUV for the day which worked out well. The teachers are all amazing, they had a tough, tough year for many reasons, I know they all worked far beyond what should be required of anyone in their positions and I am forever grateful for their efforts. They are scattering to other positions in the county, so our team of many years is disbanding and new ones are reforming in its place and we are all continuing on.
Our next door neighbors have these two apple trees on their property that my dead friend Alice planted many years ago. The are huge now and every year, we fail to get apples from them. This year, I decided to give the apples a fighting chance – I learned that each flower makes a cluster of apples like this:
And it’s too much for the tree to produce this many apples, so you have to thin them down to one per cluster. So I patiently did that with the clusters I could reach from the ground or a little step stool. And then because I didn’t want to spray the entire thing with pesticide, I bagged each little one with an organza bag that you usually get tiny gifts in. Only after I ordered 50 or 100 of them from Amazon and started to bag my darling apples did I realize I should have bought them in green and not white. Oh well. So I estimate I did about 20 of these bagged apples – hoping to yield at least one for me and one for my neighbor and maybe…one for Alice’s grave. I guess Alice’s grave goes first, right? I’m not sure. Yesterday, I walked outside and four little baggies were one the ground! I was saddened. We’ve had so many storms – I’m not sure what happened to bring those particular baggies down – a curious deer? Maybe all my bags are destined to be on the ground.
We went to Friday Vibes and had Chik-Fil-A (which was delicious) and also Whole Foods chantilly berry sheet cake (someone’s birthday) which was also delicious. This is Jeremy and Edda talking to Tara (the Director of Main Street) who is such a huge bundle of energy, it’s hard to even describe how much good will and happiness she radiates.
Now that I go to church, I have a ready audience for my baking – so I have been baking weekly whatever makes me happy. I find chocolate things to be difficult to make – it’s hard to put the cocoa in and have it be either not too dense, nor too dry. I’ll work on that. But I also wanted to work on making frosting decorations, so I ordered a bunch of tips and Felix and I experimented with this play frosting you can make (not from butter, but from shortening instead) reuse over and over again for practice.
Took Felix to the MVA to do his driver’s road test. He did great! Passed with flying colors – as did our car. I was nervous, I hadn’t checked all the lights and turn signals to absolutely 100% make sure that they were working, but hallelujah, they were. Now, he says, he’s “free” or at the very least “a real American” whatever that means.
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.)
