EWR-PDX Friday September 24th 11 am has been imprinted on my brain for the past month like a beacon of hope, that thing to look forward to that has kept me going. That is when I am scheduled to depart from Newark for Portland to visit B for four days. I’ve been so excited to visit him. I miss him more than I let myself realize because it’s easier to feel it as an absence than an ache. And I am so happy for him, so thrilled that he is spreading his wings clear across the country. I’m proud of what a fine young man he is and…and if I keep going I will get all sappy and I’d rather not. It has been five months since I’ve seen him, the longest we have ever gone without in-person contact. I’m hoping to see him more frequently if I can manage it. And managing it is an effort.
T is terrific, he is up to speed with being primary caregiver for V and Ruby, it’s just that I know it’s a lot for one person. Just this morning, before I get to the computer, I wake up at 5:30 with a knot in my stomach that our scheduled weekend help has fallen through and he’s completely on his own. I drink a half cup of yesterday’s coffee I put in the fridge just in case I had this sort of early morning, meditate and pray, do the mini crossword and check the headlines to make sure there isn’t a new war/flood/other climate catastrophe.
By then it’s time for the real day to start, the one with duties. Make a pot of coffee, make lunch, unlocking and locking along the way: tortilla chips, salami, yogurt, mango chunks. Kids half his age make their own lunch but V has no control around food. It is why everything is locked. It is why after I get him ready – which includes luring him into the bath and then having T shave him and rinse his hair and having him come down for breakfast without putting on any other clothes he finds: earlier in the week he ran down to the basement where he spotted a sweatshirt on an 80 degree day; yesterday he located the shirt he had worn the day before and put it on over his clean shirt — it’s hard to be so alert so early in the morning to catch things before he does until the van comes – much too small for four teens/young adults, a matron and driver, and V sometimes has a problem going to his assigned seat instead of where he’d prefer to sit. So I am beyond relieved by the time he is successfully out the door and on his way. But before I can catch my breath it’s Rubytime, time for the slow slow walk for her to sniff the morning news and for me to watch all the neighbors gathered at various bus stops up and down the street, the parents chatting, the kids playing on the curb, the normalcy of it still after all these years causing a little heartache, because I expected my two boys, so close in age, would be like the other siblings I see together.
That that would be the farthest thing from the truth is something I never could have fathomed even after V’s diagnosis because people with little kids never want to think that far ahead, to even consider that we would need to make such detailed and thorough arrangements for a 20 year old in order to go and see his older brother (T and I are each making separate trips over the course of the next month) because we can’t travel with V at this point. Although I just read an article about a woman who started biking with her severely autistic 24 year old and had a vest made that said “Autistic – Be kind” and she said that it drastically changed how people responded to them, from impatience and frustration to yes, kindness. I wonder if such gear would have helped with all the awful experiences traveling with V over the years on our regular trips to see T’s family in Seattle, the way we were treated by insensitive airline staff and glared at by other passengers. Now with so many more unruly confrontations on airplanes I can’t imagine taking V on a flight. There’s so much I can’t imagine anymore.
And so the relatively carefree parents and kids on the curb, as adorable as they are, as wonderfully interracial as our neighborhood is, it’s still like staring at a portrait of a future you’ve been denied. I try to let it go, to shift back to gratitude and mindfulness, like Ruby, who knows nothing but to sniff at whatever presents itself. She has accepted her decline without even seeing it that way because that is the gift of being an animal, you just can’t overthink things.
She goes limp as T carries her inside and I mash her medicine into wet food to help her achy joints and then finally, my kids are taken care of, I start the unlocking one last time for my own breakfast: almond butter hidden behind the canned goods, raspberry spread locked in the fridge, gluten free bread locked in a cabinet, only the coffee, which V has no interest in, is out in the open. It takes as much time to gather and then re-hide the ingredients as it does to make breakfast.
By the time I sit down at the computer I feel like I’ve already had a full day. I wonder why the words don’t just flow as soon as I am situated and yet I acknowledge my effort. So much effort. And how it will be a good thing to be away from it for a few days and to have time with B and S. Yes, that is a special bonus that my BFF who is also B’s godmother/friend is coming out too.
S was my traveling companion for many years – from Argentina and Brazil to Hungary,Turkey and Mexico – and it is so exciting to be going away with her again and to visit B, who we both love dearly. So much abundance it’s hard to contain myself.
I go through the same obsessive patterns I always have with travel: I call twice to confirm the hotel reservation, check the airline itinerary repeatedly to make sure I didn’t get the day or time wrong, make sure my ID and other essentials are in my wallet, and that I have the wallet in hand and concentrate on what else I can control because the fact is most of life we can’t control. We deceive ourselves by focusing on what we can master and blocking out all the uncertainty of life. To embrace uncertainty, now that takes a lot of effort, at least for me. Meditation and prayer are what keep me from getting lost in loops of “What if…” because whatever arises I will handle it as best I can. That’s all we can do.
And so it is Friday morning and I’m fully packed and ready to go: confirmations and itinerary on my phone and printed out for reassurance, I think I remembered everything I need but anything I forgot can be found and purchased in a city of 600,000. A city where there is one awesome person I can’t wait to see.