Take Offs and Landings

by Allison Moore | Aug 31, 2014 | Day by Day, Uncategorized | 11 comments

“Move to a new country and you quickly see that visiting a place as a tourist, and actually moving there for good, are two very different things.” 

― Tahir Shah, Travels With Myself

I know that statement was very true for me when I moved to England 8 years ago, and it was probably the same for Vernon when we moved back to California two years ago this weekend.  Its one thing moving house, moving country is quite another.

After the 10-month visa application process, we had forgotten whey we’d wanted to move to America in the first place. We got caught up in the moving momentum and suddenly found ourselves staring at US customs officers like deer staring at headlights. After working through the culture shock (yes, even for me…granted, we did arrive in a presidential election season) we recognized the benefits.  England was a great place for us to start our lives together, and we loved it there, but various things that came up in our lives made us realize we couldn’t really pursue our interests as easily as we might in the US. Plus, I’d had Justine by then and was realizing how much I missed having my family nearby as well as a larger supportive community (an unexpected jackpot I’d found in San Clemente years before, when I’d returned to my childhood-hometown.)

Here we are saying good by to our charming home of the past 3 years (yeah, we move a lot, apparently.)

We adore our English friends and family, but we never had found the same sense of ‘larger connectedness’ that I’d experienced at home. It may not have been important to Vernon, but it was important to me. Possibly a cultural thing.

I am sure Vernon would have been taken care of in England by the medical staff (and there wouldn’t be expensive piles of bills to pay) but I also wonder if the ambulance would have arrived so quickly, if we would have had access to the same quality of care. I’d like to think so. I DO know that Vernon has received those things here. We just happen to live close to one of the best brain-trauma hospitals in the country, so of course that is where Vernon was taken after the crash.

I also know that the generous care that the kids and I have received through our local community has been amazing and life-changing. I can’t imagine holding up as well as I have without them (you!)  Having my parents (and other volunteer babysitters) nearby to watch Justine  so that I could visit Vernon in the hospital regularly has been so helpful.  Having people fill our fridge, cut the lawn, sweep my floors, get into my business—I am beyond thankful.

This may have happened in England too…the people we know there are so wonderful, I have no doubt they would have come into our corner there.  But it happened HERE.  And here is where the love has manifested in action. I am so thankful we moved into such a kind and caring community.  So two years later to the date, I remember and celebrate our move to THIS home.

“Why do you go away? So that you can come back. So that you can see the place you came from with new eyes and extra colors. And the people there see you differently, too. Coming back to where you started is not the same as never leaving.” 
― Terry Pratchett, A Hat Full of Sky

Here is a very much younger-looking Maki getting prepped for the long flight from LHR to LAX two years ago. He’s such a jet-setter— even as I type, he is on another long flight from New Zealand to LAX and will arrive with his mother in the morning.   This family never claimed to have a small carbon-footprint. Oh well… chalk it up to ‘what you do for love.’

“Not all those who wander are lost.” 
― J.R.R. Tolkien, The Fellowship of the Ring

Sound and Vision

by Allison Moore | Aug 30, 2014 | Day by Day, Uncategorized | 18 comments

I’m so happy about this update, I’m adding music. Tonight’s soundtrack brought to you by the Thin White Duke, himself.

SOUND:

What a lovely surprise today to find that Vernon was able to vocalize a bit. He has been working with his speech therapist, Pilar, this week.  (Remember she asked me to write a list of his interests?  Apparently I’m the only wife who has ever left her 6 full pages…maybe a bit tmi? Just wanted to be thorough.)

Jen went up with me today, and we were thrilled to tears to hear the most basic soft grunting sounds through his trach.  And even better, we were able to meet Pilar and watch her work with him.  Among some other recognizable words, he was able to say the kids’ names and even count how many people were in the room at one moment (5). He was relatively chatty for a little while, before tuckering out. Though it is still hard to understand him, Pilar will be helping him learn to speak clearly again over the next months.  It is still remarkable to witness so much progress in the course of his first week at Kindred.

Below is a little video of one of his most important first words.  You may have to turn it up to hear him…his sound is pretty soft, but it is there.  So is a mustache…another unexpected surprise. (I’ve asked them to put an order in to shave it…Vernon will only get to play Magum PI for a day.)

Now onto VISION:

The reason Vernon is finally able to vocalize at all with his trach still in place is due to a little contraption called the Passy-Muir speaking valve. This is a one-way valve which attaches to the outside opening of the tracheostomy tube and allows air to pass into the tracheostomy, but not out through it. It is the turquoise-colored section in the photo below.

I had seen this daily at the last hospital room, in a plastic bag with all the accompanied reading material, just waiting to be used. But Vernon never quite got that far there.  In the meantime, I had read the inventor’s statement peeking through the plastic, and was moved and inspired. In a nutshell,  David A. Muir, was a very special man who happened to have muscular dystrophy and then became a quadriplegic.  At 23, while studying biochemical engineering, he became ventilator dependent. Though he had accepted the other difficulties of his disease, he wanted to give up when he found he could not talk. However, he overcame this by finding a solution over many months. His invention not only helped him speak again, but it has helped countless trach patients over the years.

I hope to remember his  story when I am feeling insecure and limited about ANYTHING.

You can read more about the Valve and David’s story here. Totally inspiring!

Sitting UP

by Allison Moore | Aug 28, 2014 | Day by Day, Uncategorized | 33 comments

Now we are getting somewhere.

I finally was able to see the physical and occupational therapists at work with Vernon today. They worked for about 20 minutes, as they have been doing every day this week. So far, Jaime and Veronica are working as a team, helping each other with his weight, as he can’t hold himself up alone yet. And of course they are both getting to know him and his abilities/limitations.  Eventually as Vernon gets stronger, they will be able to work on him in separate sessions.

I was so proud to see him sitting up. Yes, he was aided, but he was able to follow instructions where possible.  He can open his eyes, track movement (to a degree), and move his head around a little. I have never seen him nod yes and shake no as clearly and as often as I did today—especially at the questioning of others.

So at 14 weeks in, I present you with a SITTING VERNON!

BRAVO TO OUR HERO!

Christopher Reeve