September15/16: best of times/worst of times. As you already know, I love my birthday and try to squeeze as much enjoyment out of it as I can. My wedding anniversary, which falls the following day (I’ve never liked that) is kind of hard—well, the last two. It’s not a fun day to celebrate anymore. Of course I filled it up with other things, but the thoughts still lingered. I took the day off and didn’t even drive to say hello. And there was no guilt.
Today, however, I was ready for company, and I got a great reaction when he saw me coming. “HAPPY ANNIVERSARY, DARLING!” I greeted him. The nearby aid thought it very romantic and took our picture.
I had a Care Plan Meeting today with some of the administrators. They wanted to discuss the issue with his swallowing. They still find it too big a risk for me to be feeding him any liquids or food. It came up that it might be possible for me to sign a waiver and feed him on my own, but they weren’t making promises. I told them I’d like to look into it more, look more closely at the risks of aspiration. It’s hard as I think cognitively it would help him greatly, but I’m not a doctor and have to respect the suggestions I receive from those who are.
They also told me that because of his feeding tube, he still benefits by requiring skilled nursing care, according to the MediCal system. But they consider him a long-term patient, unlikely to live at home again, unless I push for it. I don’t know what to say. I’ve been seeing a lot of hope lately, I guess I’m back to believing in his healing more than the staff is. It’s the way I choose to look at him. It’s better for him that I do.
One good thing that came out of the meeting though is that I asked if we could plan for him to come home for Christmas day. And they said, “Yes of course!” So I need to figure out wheelchair transportation, etc. But it got me so excited to be allowed to have that plan for him. They thought he might even be able to sit in the back of a car with a seatbelt as long as we transferred him properly.
Ok then, I was given the news that he might never live with us again (from the mouths of the medical pros) and then the news that even now, I can take him outside, if I just organize it properly. In order to get him ready for travel, they will need to start working more closely on his standing/sitting transition skills, which is great. Anything we can get is helpful now.
I’m taking off on a little road trip to get way for a couple of days. Thanks, mom and dad, for taking the kids.
I love having a birthday in September…and having it right smack in the middle of the month, with a good solid odd number takes the birthday cake. It’s a great month for reflections and new goals because ever since I started going to school at 4, September has signified the time of year when summer holiday ends, I’d commenced to the next grade level, a whole unknown lot of knowledge is waiting to be taught and learned, and usually in September, I hadn’t messed up my new slate. Paper, pens, teacher, friends, everything was new…or renewed. And so was the wardrobe, if I was lucky.
My father, also a September child, celebrates on the first. He took his birthday pretty seriously too, and if there was a major upheaval in life (a move, a new job, a significant shave) it was most likely to happen on that day. This is how I grew up. September (or one’s birthday) is a time of jumping toward a change…at the very least, reflection.
So I approach my birthday as my “new year.” I’m either nine months behind or three ahead. I keep forgetting how old I am though, so I guess I’m reaching the older side. Ah, yes, closer to the day I can rest on my laurels, right? I’ve heard that 40 is the old age of youth and 50 is the youth of old age. So at 44 (I think that’s right) I’m smack in the bookbinding.
I’m saying it out-loud (well, typing it out-loud): THIS IS THE YEAR I CHOOSE TO BE AN ADULT.
About time, right? Well, if I live to 88, I have only 44 years to act as a grown-up. It could be worse…I could have been intensely responsible since I was a teenager, and where is the fun in that?
No, its not that bad. But since I’ve been spending so much time with the handicapped and elderly, I look at life (actually, I look at death) differently than before. I know they all see us as a young family, which we are in comparison, but I often think of these people as my peers. They are certainly peers to Vernon. So yeah, I see life and aging differently than I used to.
So today, to mark my birthday, to celebrate growing up, guess what I did?
I bought life insurance!
I KNOW! Brilliant, right? It’s my self-appointed rite of passage. I will also say that was the most boring part of the day— kept telling the agent I was late to meet my friend Maila for coffee, and I needed him to hurry up, already!
The truth is, Vernon and I had never bothered. We were always in transition. He was getting his Masters, I was dealing with Immigration, then one of us was supporting the other through a variety of jobs, then Maki came, then Justine, then we moved to America, then we moved house, office….blah blah! We were ALWAYS struggling, never settled. It seemed like we were just getting grounded at last (making money, saving a little, we had exciting prospects, my parents could watch the kids if necessary) when the accident happened. I don’t think we imagined anything would happen to either of us, not yet. There would be plenty of future time to think about things like life insurance. Applying for health insurance in California was complicated enough.
Another admission is that after Vernon’s accident, I went INSURANCE MAD. I got roadside assistance, I spiked my auto insurance up as high as I could. The other driver only had the necessary minimum, so as my driving increased, I began to see myself as statistical threat to someone else, I wanted to make sure I could help my potential victim’s family out with his astronomical medical bills. Who cares about the car parts?
I really only have two major assets in my life that I need to protect: Maki and Justine. They are my priority, honestly more than Vernon is. Vernon feels more like a job now…a job I totally love. But I get to come home at the end of the day and normal life begins. Maybe being an adult really doesn’t have to do with age, but with ones ability to actively care more for others. In my case: I’m lucky enough to have a family to take care of. I don’t have a choice, but it helps me know my secure-ish place in the chaos better. As much as people like to complain about lack of freedom, I don’t think there is anything more stabilizing than healthily caring for others. It’s a Super Vitamin to a fulfilling lifestyle.
So there: that’s my take on life insurance. I won’t bring it up again.
But my goal is not to die and leave something to my kids. It is to live! And one thing I probably can’t express here is how grateful I am to those who have given financially to our family and Vernon’s recovery. It’s true: we lost our living income when Vernon was injured. But God provided through people’s generosity (my siblings and parents cover my rent every month…I know! It’s a humbling but marvelous thing: I am truly blessed.)
What happens when a person receives so much from others? One can’t help but become a more giving person. I want that to be the effect on me. I know I have been changed by this, so my goal in this next half of my life is to become a more generous person. I want to bless others the way others have blessed me. It’s only a small drop, but I also wanted to mark today by giving. As I’ve been captivated by the outpouring of grassroots hospitality to help soften the Syrian Refugee Crisis in Europe (and here?) I started researching various charities. If you are interested in giving to this cause, I did find out that if you donate to Mercy Corps , Travelocity will match every dollar. I love how love multiplies.
The best part of the day though? A RAINSTORM from Heaven. I don’t think it has ever rained on my birthday before! (Well, most likely in England…but never HERE!) As we got soaked (despite large umbrella) on our walk across the freeway pedestrian bridge this morning, Justine exclaimed: “I feel like I am going to school in England. Let’s pretend its my first day. Oh dear, I’m so nervous!”
Everyone knows we’ve been in a drought. It’s a big deal to get rain. This is so exciting. If this is my birthday gift (along with all the other Sept 15-ers) I’m sharing it with the whole region. See how generous I am already?
It was a good day, with rain at the top and life insurance at the bottom. I saw a few friends, exercised, had dinner with my family, and went shopping. I even tried on perfumes, imagining Vernon would have bought me one if he was able (he used to get them for me in Duty Free..never knew I would miss that.) It was a wonderful day.
A special guest joined the kids and I today on our Sunday visit. Melissa Disney is like a sister to me, one of my closest friends, but since she is a working mother who lives in north LA, she can’t get down to visit Vernon very often. We were lucky enough to get her overnight by herself and we kept her with us as long as possible today. At her suggestion, we threw Maki’s guitar in the car, just in case she felt a little song coming on. We knew she would.
I’m not sure if music will be the main medium, but I think we might be going into a season where Maki will take more of a role in his dad’s recovery. Not that I would put that responsibility on him, of course. But as Vernon grows in awareness, I think he’s starting to be fascinated by Maki again. I can hear it in the questions he asks him and the way he looks at him. I can see the flicker of pride in his face again. He was deeply moved as he remembered how he used to hold Maki on his shoulders as a child. And I expect Maki is beginning to enjoy watching the recovery more closely now that we have our HOPE back. The disappointments of the past year have taken a lot from him, and I know its been harder than he lets on.
I’d told Vernon last week that I’d bring him an iPad if he thought he was ready for it. He was always such a tech-head, that it seems some sort of computer/device would be a good tool for him, but we only try it out again every few months. It usually ends up being a frustration and a reminder of how handicapped he actually is. I don’t think he’s quite ready this time either, but maybe we’ll try again next month. Thanks for the loaner, Maki.
Justine of course, has never had a doubt, that her dad would recover.
Melissa figured out some simple Beatles songs as Vernon’s favorite musicians, the Logie Family, couldn’t be there today. They have been spoiling him with their gifts. Chris Logie knows so many Beatle’s songs, that Justine thinks the family IS the Beatles and that he is the lead singer. Well, Vernon has always loved Melissa’s voice too. Who wouldn’t?
I just want to brag on Melissa for a minute before finishing up. She was honored last week with a Lifetime Achievement Award for Child Advocacy in Africa. Story HERE. She doesn’t brag about much, so I’ll do it for her. She’s got a huge heart of gold.
I suggested out loud that a good goal for Vernon might be that he and Joe could come to my parent’s house on Christmas Day. I have no idea if he’ll be ready by then but it seems like a good goal to put out there. We like the sound of it. Joe perked up with transportation ideas. Mind you, Vernon hasn’t travelled by wheelchair since about a year ago, and he’s never without nearby nursing assistance, so it would be a definite Christmas Miracle if this happens. Something to hope for, for sure.
Justine picked up on this idea as if it was already decided and started organizing the event. In fact, she started pushing for Halloween. She hears Hope as Truth. That’s how good young ears are…the younger the human, the better the hearing.
Hope is contagious. Melissa, as expected, felt the song coming on. Pardon my lack of videography skills, but you’ll get the idea:
What a great crew to look forward to the future with.
Last night was “Back to School Night” at the High School. Hard to believe it’s been only a year since I went alone to Maki’s school for the first time last year. Gosh, I was a wreck by the end of the night. But I’m a different person this year. So is he.
“Alli, you really don’t have to go to Parent’s Night, you know…lots of parents aren’t going to go…especially with this heat. It’s no big deal, don’t bother.”
“I’m not going because of other parents, Maki. I want to meet your teachers. Besides, I never miss it.”
“My goal this year is that you won’t have to meet with any of my teachers.”
“Let’s make it so that this is the only time I meet them then. I’d say that is an excellent goal.”
But actually I love meeting the teachers, when the year is fresh. I get a better idea of what Maki is going through every day. When Maki talks about his classes or homework, I can visualize what his teacher looks like and remember something of their personality and their approach to teaching, as they themselves explained it.
These are the people we entrust our children to for a whole year. It’s a privilege to meet them. Other than these Open House-type nights, I’d have no idea what his classrooms look like or where the lunch tables are. For Maki, High School is his world, so its nice to get a sneak peak.
The high point for me was “skipping class” during the PE segment and watching the sunset. These kids have a great view, whether or not they notice it in their rush between classes.
I also noticed this particularly encouraging sign on the wall of Maki’s Spanish classroom. Above everything he learns in that class, I hope he picks up on this. Nada es impossible!
The best part was coming home and discussing my impressions with Maki. He’s got some great teachers this year, and he seems to have a really positive attitude as he moves forward. Again, I think back to this time last year and am amazed and grateful for how much we have each changed. I think we both feel a lot more stable.
Thinking about this today, I realized that I approach Vernon’s medical staff a little like the teachers at Maki’s schools. I like to know who they are, I like to at least have a face to reference when I hear a name. For a long time in the beginning, I kept hearing about certain doctors and nurses that would check on him that I never got to meet. But now I am very clear on who the staff is; I have at least a face for every name these days, and in most cases, a lot more than that. It feels good to know who is in charge of which area of his life, specific people I can bring questions/problems/solutions to without wasting time circling around the wrong person.
But I have to respect their boundaries too. I got my wrist slapped a little for not running something through the Head of Nursing yesterday. I had talked to other people, and I thought that was enough. I never considered running it by her. Oh well, now I know, but I’ll have to be more cautious and respectful of her position in the future. It doesn’t matter how long we’ve been in the system, I’m still learning the ropes. And there are a surprising amount of people to have to run things by in a place like this.
On the other hand, I’ve been trying to keep everything above-board with the Doctor. I sent him the photo of Vernon drinking from a cup, to which he responded it would still be safer if we used thicker substances. I can respect that too. He also said he would be pushing for the Speech Therapist to re-evaluate Vernon for more therapy.
Today, while at Davita, I asked the nutritionist for dialysis-friendly food suggestions. She gave me a list. Vernon seemed hopeful.
And when the Nephrologist, Dr. S, overheard this, he insisted we order another Swallow Study from the hospital, and wrote the order straightaway. While I had his attention, I asked if we could move Vernon’ back to four days a week at Dialysis. This is something Dr. Dan wants for him too…I was just passing the word along. I think he can tolerate sitting a little longer again, and it would be great to give him an extra recovery day. I guess tests have to be run and charts have to be read before a change can be made, but the ball has been rolled.
How did I get from reporting on Back to School Night to talking to the various medical staff about changes to Vernon’s care? People have been placed in both Maki and Vernon’s paths in this time of their lives. They are people who mean them well, who want them to improve and grow in life, and yet each has a specific role and set of rules to follow. I’m just glad I’ve met them all. Even if it’s just an illusion, that alone makes me feel more involved. Simply put, I’ve got nothing else I really have to do but take care of my family.
Post Script:
Signs of improvement: here’s Vernon looking like Liam Gallagher on his chair. He is into watching TV with Joe now. American Football is his latest obsession. This is a first, as far as I know…its always been Soccer (English Football.) But now apparently, he’s a big fan. I’ll have to pay closer attention to the game season, just to keep up. It’s a good problem to have.
I got a voice message from Mesa Verde yesterday morning: “Vernon doesn’t want to go to Dialysis. He says he wants us to talk to you.”
I laughed out loud before calling back. This was the first time the care home has ever called because Vernon wanted to talk to me. (I got a call from the Speech Therapist at another place last October, but I could barely understand him then.)
Also, I loved the fact that he had decided he wouldn’t go to Dialysis. He remembers what it is, and he hates going everyday. It’s nice to see him trying to fight for his independence.
When I called back to speak with him, I was able to explain that my mom was waiting for him there, so he had to go. It didn’t take him long to agree and settle down. I promised to be there tomorrow.
The other big moment I had yesterday was when I looked at my passenger side rear-view mirror, which had been pushed toward the window and reflected the clouds above somehow. It was the most amazing day for clouds, by the way. All day they were showing off the way they do in the Bigger-Sky states.
It’s hard to tell in this photo, but the words are there: OBJECTS IN MIRROR ARE CLOSER THAN THEY APPEAR. I first noticed this as I glanced right while driving. I immediately thought: “HEAVEN is closer than it appears, right? That’s got to be what it means!” And I’ve been thinking it so ever since! Hey, I’m just reading the signs.
(This is through though the sunroof at a light. It only got better through the day.)
Today, while visiting Vernon at Dialysis, when he wasn’t trying to “get up, just to get a better view” (in other words, “I’m not REALLY trying to escape…yet.”)
he was obsessing over going home. It’s tough, I tell you. With his enriched awareness of being so dependent on professional medical care, he acts more and more like a wrongly-accused felon. “I’ve done nothing wrong. Sure, I can walk and eat and drink. I am totally fine. What’s wrong with YOU?”
I know better than to take these things personally. I know he loves me and it’s not like he has a say over much these days anyway. Honestly, I keep thinking: “Wow, Maki is the easiest kid in my life right now. Justine and Vernon are both into intellectual/emotional manipulation toward me at the moment. I can handle Vernon: my five year old is teaching me. If she’s not teaching me, she’s toughening me up. Vernon doesn’t stand a chance.
And thought that sounds mean, perhaps, I am also grateful. I’m thankful that Vernon is being so feisty, that he is trying to climb out of his own pit at last. He seems to be increasingly aware, able to follow directions, and even remember things from more recent past.
One blessing of going to Dialysis at this particular center is that it is just down the street from one of my favorite OC coffee-shops, Portola Coffee Lab.
I’m glad I went in because this sign caught my attention on my way in.
(I guess Baristas need to wake up too!)
This is the sign I saw on the way out…why wouldn’t I believe it?
Well, that’s the kind of fortune cookie I’ll take, thank you very much.
Indeed, lately this does seem to ring true. Vernon is healing. And though I hate getting my hopes up too high anymore, it sure seems like its moving quickly. And of course…despite everything, my hopes are escalating quickly as well. But I have no real goals. It would be great to get him on one less day of Dialysis, so he can get more mat time in, and eventually some physical and speech therapy again. And I’d like to see him working on getting some more food and liquid down his throat.
As you may have read, Vernon has been discharged from all food and drink at the nursing home by the Speech Therapist, based on Vernon’s risk of asphyxiation. So annoying. The Doctor knows that I would prefer him to try to eat for the cognitive value, even though I recognize the infection risks involved. But I recently realized that the Dialysis Center doesn’t get those same orders and have actually given him small cups of water when he has asked.
IN the hour and a half I sat with Vernon today, he drank down 8 little cups of water. He drank slowly, perfectly following my instructions, free to take sips as he wished.
Oh the irony. I’m not allowed to give him “safer” thickened liquids where he lives because the kitchen has no order for him anymore. But I can give him water anywhere else. I don’t know if this is the safest thing to do with him, but heart won over the rules today. And he hardly coughed at all. When he did, he quickly pleaded: “that was a mistake!”
I think we left on good terms. He was no longer asking for me to take him home…or divorce him. He recognized the EMTs when they came to pick him up. (They are the BEST people, by the way…they always treat Vernon like a brother. Always.)
“You look tired,” he greeted the tall one.
“I am tired.”
The truth is, the kid did look tired. Vernon has always been intuitive about other people, but he lacks the filter now, I guess. It’s not a bad thing.
He told the EMTs that he had been drinking cups of water and then asked me if I would go get some more cups so that they could partake as well. They made their excuses why not, but it was fun to watch Vernon making hospitable commands, as if he wanted to buy the lads a round of drinks, please.
Of the new things I noticed about him today, I’d say the flow of his connections and communications is more fluid than ever. He seems to be less jerky, even in his smile. Amazing Grace.
It was a hot, hot day, so I took the kids down the beach to cool off in the evening. We could hardly tolerate being inside.
The air was more thick than yesterday. Heaven was more heavy.
And then it broke.
“Clouds come floating into my life, no longer to carry rain or usher storm, but to add color to my suset sky.”
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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