I’ve decided to make October my Autumn-Cleaning month. If I were my old self, I would have allotted a weekend, maybe a week. But now I know how long everything takes, especially on the domestic front, so I’m giving myself October.
First things first though: my bedroom. Remember when I spoke of starting to redecorate a month two ago? Well….as usual, my cleaning-lady momentum disappears once the grand intentions were loudly pronounced.
In the last post, I mentioned Maki starting to wear his dad’s clothes. Though many of his things are still packed in the garage (we moved house last January), some of his clothes were still hanging in my closet. I’m claiming it as MY closet now as it’s expensive to live in California, I might as well get some more closet space out it! Not really, I’ve always been happy to share…Lord, knows the closets are bigger here than they were in England!
Actually, I’m aware that its more than that. I am in the long process of reclaiming my life. Life is for the living, or so I like to believe.
And no one gives me more of passionate reminder than Justine. When you’ve got a live-in muse, its hard to ignore the message!
So…with a young girl in the house who likes to play dress-up, how could I resist bringing out the camera to capture moments of her play? It means that a short-term closet-cleaning job turns into something 10x longer, but also 10x more memorable, and 10x more fun! “I can wear your clothes for dress-up now. What do you have for me?”
Always with the “what’s yours is mine” philosophy! Apparently, I can’t resist that either.
To the left of this one, you’ll notice my new bookcase. I’m just beginning to fill it up. Bob Lloyd, my master-craftsman friend, made me this beautiful custom bookcase. I just finished staining it this week (my first time staining any furniture, actually) so I’m feeling quite proud. This is the first time I’ve had a bookcase in my room since marrying Vernon, and its something I’ve missed very much. Old habits die hard.
If a room is meant to be a safe haven, its best to have the things you love in it. If you can’t have your loved OTHER in it, you can make it the way the one left in it likes!
We are getting there…it’a long work in progress. I’ll start filling up the bookcase, and soon I’ll be surrounded by my old friends again. As those boxes come in from the garage, I’ll be replacing them with this…a box full of Vernon’s clothes and shoes that were still hanging in my closet.
I pulled out a few things Maki might like or grow into, but Vernon had his own unique style. I keep thinking I’d like to bring some of his gear to him at the care home…maybe get him some new shoes just for his enjoyment. But I don’t know if this sort of stuff matters to him anymore, and all clothing gets over-washed there. All his good quality clothes would be ruined in weeks. Then there is all the cycling stuff he used to order from fancy British catalogs. It’s time to put away the reminders that he won’t ride a bike again. But I can’t bring myself to get rid of these things for good… or the sell the bikes for that matter. (I will if I have to.)
Vernon was very low-key in his fashion approach, but he was consistent. He liked nice quality fabric and just the right fit. I hope he’s comfortable swimming in the too-big, over-washed clothes he’s got now. Does Paul Smith have a discount loungewear line? We’d be happy to ruin a few kits!
So I didn’t get as far as I meant to with my Autumn Cleaning, what with Justine trying on every garment I put on my bed. A skirt as a dress? Brilliant! But I’ve got the whole month ahead of me. And some sweet moments to remember.
A collar as a hood? I must say…an inspired choice!
You make cleaning fun! (Not to mention, making messes.)
It’s 7:25 am, I’ve just finished going over Maki’s Spanish vocabulary test for his test today, while he ate his cereal. I marvel at his adolescent memory skills. Were we really all like that once upon a time?
Here is the continuation of our individual family updates that I couldn’t finish last night.
Earlier this week, we finally took Vernon’s big computer monitor out of the garage and set it up for Maki in the office. (I set it up for me too, but already he’s getting more use out of it.) I’d promised for some time that we’d get him the student subscription to Creative Cloud, with the idea that if we wants to spend time on the computer on school nights, he has to be learning a valuable skill. Illustrator was his first interest, but he is already picking his way through Photoshop. I have a feeling he will forgo his weekend video game rights to spend more time manipulating images and working on his “logo.’ For me, its exciting to watch the wheels of his mind click in.
In the picture above, Maki is wearing one of his dad’s tee-shirts. There are a few things he has discovered in his dad’s closet (most things are packed away) which quickly become favorites. The thing is…they are starting to fit him. I think Maki gets better use out of them than Vernon would anymore.
Hulk Hogan with a kitten head. Hmmm… time well spent, I’m sure.
Justine is currently celebrating her stint as the Kindergarten Star of the Week.
Every child will have a week as the Star, where they get to head the line each day and share some personal details with their classmates. The parents sign them up in advance, but they don’t need to know that. Here is Justine’s special homework:
“I want to be an actress when I grow up and my favorite song is “Style” but Taylor Swift and I have the bestest brother.”
My Family: “A picture of when my dad comes home from hospital (with imaginary pet snake.)”
How Would I Make the World a Better Place? “Picking up papers from someone who drops them.”
One wish: “That I could catch a butterfly and keep it in my room.”
As for myself, I’m always updating. Yesterday I checked out an audio book at the library by Mesa Verde to keep me company on the commute. It was “The Fault in Our Stars” by John Green. It had been on my radar for awhile, especially as a movie was made, but come on…its just young adult fiction. I only picked it up for some lighthearted fun, but a few miles into my drive, tears were already streaming. It wasn’t sad yet, it was just so well written from a teenager’s point of view. This is exactly the book I would have loved in High School had it been written then. It didn’t take me long to realize what it was touching in me is the young love cell that never completely goes away. I let myself cry, realizing it was a surprise opportunity to mourn something…ROMANCE. If I’m sobbing in the first chapter of teen fiction, of all things, I know something real is happening. So I embrace it and it passes through.
I think mourning happens a little at a time, not all at once like we think it is supposed to. My friend Sandy, herself a widow, often tells me that grief should be treated like a champagne bottle. If all the bubbles were to come out at once, the glass would explode and make a huge mess. Instead, the air is meant to be released slowly, a little at a time, gently sipped and experienced in moments as long as the champagne lasts.
My thoughts are all over the place today so in an attempt to corral them, I’ll break tonight’s post into chewable bites, as in: Life According to Each Family Member, October 1, 2015.
I’ll start with Vernon, because he is the reason this blog even happens.
A few weeks ago, after receiving some generous donations, I ordered a PEMF mat for our own. It had to travel all the way from Austria so it finally arrived late Monday.Today was the second time I was able to bring it to him. (I only WISH I could plug it in for him during his Dialysis sessions.) With Dialysis morning visits and afternoon school pick-up, I am only able to squeeze in three trips a week to the Care Home, but for a couple of weeks I want to be diligent with that time to plug in the mat . Of course I will be watching closely for his response, but I don’t know exactly what to expect. It’s good though…we aren’t experimenting with his chemistry in any way….although I do feel a bit like I’ve just returned with an expensive souvenir from a Star Trek Convention every time I bring it through the doors of Mesa Verde and then try to explain to the CNAs and Nurses what I’m trying to do. In the authoritative words of our beloved Dr. Dan: “If they want to let him lie on a mat, let them do it!” It’s so nice to know that we are medically accepted in this space. I can only imagine what other newfangled therapies and contraptions the staff has seen over the years from desperate families trying to keep their loved ones going.
Today, Vernon was slightly aggravated until it was time to lie on the mat. He didn’t want to have a bolus feeding, so it took some time to convince him it was good for him. I find he is still an intellectual at the core, and needs to be treated like one if he is going to work with the medical staff best. Once on the mat, he twisted and turned for ten minutes, then fell into what looked like a very restful nap. I’ll be sitting with him tomorrow morning through Dialysis, so I’ll be able to observe any immediate changes then. Hoping for the best, of course.
Now for family-member Joe. In my heart, I’ve adopted him as one of ours, whether he likes it or not. I’m pretty certain the feeling is mutual, though, as even today he told me how he’d got wind (he is President of the place, after all) of how the staff wanted to move Vernon to the “long-term” hallway, thinking Joe would be better off without the burden of Vernon as a roommate. According to Joe, they thought he was getting to attached.
“I just want you to know,” said Joe intently. “I told them I have no intention of leaving him. I told them that looking out for him gives me a purpose. They can’t take that way from me!”
Oh, Joe! We love you so. Where would Vernon be without you? We are so blessed.
The sad thing for Joe at the moment is that his good friend Mary Lou is suddenly in the hospice room. She broke her hip in a fall last week, and when the surgeons opened her up to fix it, the cancer hiding away sprang up in full force. Her family is all around her now, and Joe is doing his best to make sure they know exactly what’s going on.
Joe and Mary Lou have been hanging out on the patio since before we arrived at Mesa Verde. Mary Lou always sat in the same spot, partly shaded from the sun. From the beginning, she reminded me of some classy older actress in a Fellini film. (So of course I shot her in black and white.) Here she is last June, in all her daily elegance.
This post is already long. I’ll save the other family members for tomorrow.
“I don’t know if you have ever seem a map of a person’s mind. Doctors sometimes draw maps of other parts of you, and your own map can become intensely interesting, but catch them trying to draw a map of a child’s mind, which is not only confused, but keeps going round all the time. There are zigzag lines on it, just like your temperature on a card, and these are probably roads in the island; for the Neverland is always more or less and island, with astonishing splashes of colour here and there, and coral reefs and rakish-looking craft in the offing, and savages and lonely lairs, and gnomes who are mostly tailors, and caves through which a river runs, and princes with six elder brothers, and a hut fast going to decay, and one very small old lady with a hooked nose.”
This is a snippet from J.M. Barrie’s Peter Pan. It was ahead of its time in some ways, because Mind Mapping is indeed a thing. I don’t know if the Neurologists would agree its the same thing, but I see the connection. Here is a map of Justine’s five year old mind this morning, according to the little madam herself. I’m sure if I asked her to make another one this evening, it would look entirely different.
For today, we have memories of baby bottles and boobies, her favorite current foods, pets (imaginary, past, and future), and her daily reality of boys’ and girls’ eyes.
Every day I visit Vernon, I show up without a clue of what will be on his mind that day: what concept he might get stuck on, what names he might remember. Will he be comfortable or agitated? Will he show improvement or have slipped backward again? I think if we were to map his mind, it would be a lot like Justine’s illustration here. Maybe there wouldn’t be any pet snails named Sophie on his, but it might look as simple.
What would he have? His family,most certainly. Home. Drinks of water would figure prominently,of course. American Football is starting to make an appearance. Bed.
But is there a Neverland of his own in there? Does he imagine beautiful things, does he think about God, life and death, or his connection to the greater world? The soul has a mind of its own, deeper than we can map. And what about Dreams?
He hasn’t expressed any of this yet, but I wonder—especially since I am still reading Peter Pan to him during our Dialysis sessions, and he can’t get enough. It’s the one book I’ve been able to read to him where he gets mad when I stop for a break. “Keep READING!” he demands. Honestly, as much as love the story, the book gets a difficult to read out loud for long periods, what with its heavy vocabulary and constant twists and turns. (Obviously, children were much better spoken 110 years ago.) It’s filled with wonder as well as violence. But the thing that I find most fascinating about the classic story this round is the constant theme of forgetting. It’s a natural part of childhood and growing-up.
Wendy tries to remind the Lost Boys of their own nearly-forgotten mothers even as her own memories of her parents begin to fade. But no matter, she knows they are there, leaving the window open for her return. She also tells stories to the boys to keep their imaginations full and gives them ‘medicine’ every night before bed, because this is what mothers do.
Between chapters, I often read letters that Vernon’s mother has sent from England. They arrive every week in proper red, white, and blue airmail envelopes, full of little reminders of life in the neighborhood in which he grew up. I’m sure they provide comfort and she writes so descriptively, it is easy to picture exactly what she is writing about. I’m sure they jog his memory in ways I cannot, and I’d like to think the little stories she sends pour into his inner-life, the one that stays with him while he lies alone in his bedroom.
Sometimes its as if he is a wounded Lost Boy and I am Wendy, trying to stimulate his mind with my chatter and care, trying to remind him of all he’s forgotten. And then it starts all over the next day—an awfully big adventure.
Here are some special quotes from the book. I personally find a little of Vernon in each one.
“The difference between him and the other boys at such a time was that they knew it was make-believe, while to him, make-believe and true were exactly the same thing. This sometimes troubled them, as when they had to make-believe that they had had their dinners.”
“Peter invented, with Wendy’s help, a new game that fascinated him enormously, until he suddenly had no more interest in it, which, as you have been told, was what always happened with his games. It consisted in pretending not to have adventures…”
“Peter had seen many tragedies, but he had forgotten them all.”
“Dreams do come true, if only we wish hard enough. You can have anything in life if you will sacrifice everything else for it.”
“I taught you to fight and to fly. What more could there be?”
“Absence makes the heart grow fonder… or forgetful.”
I just received an email from another woman by the name of Alison. She arrived at our story because she knows my parents, but I only know her from a phone call a couple of weeks ago. She had answered the request for people to sign up to sit with Vernon during Dialysis, and had inquired whether it was alright to bring along a friend of hers, who happened to be a Speech Therapist. They sat with him last Friday, and here is her feedback letter (to which was attached a very thorough and helpful Speech and Language Summary Report.)
Dear Allison,
I promised some more feedback, and here it is. After adorning our lovely yellow gowns last Saturday morning – which really weren’t so bad – we took a seat and commenced to visit with Vernon, first by introducing ourselves, as you might imagine. He was receptive and polite and did not seem one bit concerned that he didn’t know who we were or how we got there. Meaning, who we were connected to that he MIGHT know, for example. No matter. He’s got to be way used to this by now. All good, except that after asking him a couple of questions both Lynne and I realized that we were having some trouble understanding him. He knew it, too, so he began to pull himself toward us using the side of the chair and make precisely the same vocal response, only louder this time, as if we were hard of hearing. This was a very reasonable assumption on his part, except that in reality our problem was related to our unfamiliarity with his speech pattern and enunciation, combined with his marvelous British accent! I mean, I admit that as much as I adore Vernon’s and his countrypersons’ version of the English language, I’m not always sure I’m getting ANY Brit’s entire message because of our differences in word usage and pronunciation. This was especially the case when Lynne and I had played and sang and appreciated a variety of music on my iPad, and then Vernon suddenly said he would like to hear a song by one of his favorite bands, told us the name a few times, and for the life of us we could not decipher what he was trying to say. (In retrospect, one of the reasons for this was because we had never heard of them…) After a series of attempts to get it, we didn’t, and we busied ourselves trying to come up with something either equally compelling to offer, or at least distracting. Pretty soon Vernon asked for a paper and pencil. I happened to have one and he eagerly seized it and began to write. The name of the band?, I wondered. Some random scribbling that would also be problematic to translate? As challenging as it was to read what he had written, it was not impossible, and as he again uttered the name of the band it clicked: Mott the Hoople. Of course! And the “of course” is not because we knew about them, but because that is what he had been saying all along!
Sometimes Vernon seemed physically uncomfortable, the way he was slumped down in the chair, the continuous movement of his lower limbs at intervals – especially at first – the look on his face. He never verified discomfort, however, when one or the other of us asked him if he was alreight. He did not ask when he was being picked up, there was no concern expressed about going home, he did not require any sort of staff intervention for any reason, and if it could seem like a long two hours at moments, when it was all done it might as well have continued. Except that Vernon was undoubtedly ready to get out of there.
Lynne was genuinely moved by Vernon’s personhood and his predicament. She was also grateful to have been included in the opportunity to visit and she decided to contribute something by writing an informal Speech and Language report (attached). She wondered aloud about a lot of things that I couldn’t answer, and she asked that I send her the link so she can donate. I’m not sure where she stands regarding making additional visits, but I know for sure that she and I will be touching base about Vernon for the foreseeable future.
I’ll stop for now. After I mention that the Sunday Funday blog entry was delightful. Your comment about Vernon becoming tearful at times during the event helps me believe that he knows he is loved.
Gratefully,
Alison
I’m so thankful for this kind of feedback because each person that visits him sees something new, from a new set of eyes. Though I used to try to write with him, its been a long time, and I had forgotten that of course, he probably can write better now! I’ll be bringing a notepad for him next time I see him (though I do understand everything he says!) And Mott the Hoople! Where did that come from?
I am still needing help with Vernon’s Dialysis times. We are hoping to get him to fewer days per week again, but for now, he is still doing five two-our sessions per week. At the moment, we have dates up through October. The last two weeks of October, we will be in special need of help, as my parents (who help me out a lot with babysitting as well as dialysis sessions) will be out of town. If you want to help, please sign up HERE. Thank you so much!
A special cover of Vernon's fav song 'Waterloo Sunset' by friend and singer/song-writer Ian McGlynn. All proceeds support Vernon's recovery! Donate what you can and download a beautiful song in return.
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