Saturday, May 29, 2010


People come and go in our lives every day.  As a shop owner I have the random folks walk in every day and most stay just that, random and unimportant.  But Ubaldo is an exception.  Ubaldo was a customer.  He bought nice things, like siver punch bowls and giant poinsettas.  He was friendly.  We were friendly. 

But Ubaldo has become such an important part of our lives that the tapestry is so beautifuly woven, who would dare take out the thread?   Our relationship began as customer/shop owner.  I knew he was a care giver from talking with him as he made purchases.  He seemed nice enough.  Then one day he bought something big and Jed delivered it.  They both told me at seperate time how much they enjoyed the other person.  "What a nice guy he was....."   So, when I was desparate and in disbeleif that rehab would actually send Jed home in his state of inability, it's no wonder that I, seeing him and his mother enter the shop, would say, "Ubaldo, are you still doing caregiving?"  When he responded, "Yes, I'm looking for a job, " I said, "You're hired."  Later I learned his mother thought it quite strange that I didn't require recommendations.  One of my good friends from the shop said, "What better recommendation can you get?  God put him there and just the time you needed him."

Now.   Now he is woven in.  He is family.  He is friend.  He is lifter of spirits and carrier of pain.  Ubaldo is our great friend.  When he and Jed are working together (stretching, standing, exercising) they are so joyful to watch.  They love each other.  (Neither of them would admit it, because, oh my God, what would that mean?), but they just love each other, easy and mean.  They cuss like sailors and laugh like little boys.  Sometimes they are laughing so hard that neither can  move beyond the  moment.  More cussing, tears of laughter, and more cussing. 

Now if you were a quadriplegic what would you prefer?  A caregiver who took care of you, or one who got under your skin and called you a "jack ass" when you were one? 

This man is a tribute to humanity.  He has taken to caring and loving our kids and grandkids, filling our home with beauty and wonderful food, and battling all the medical insurance and legal concerns that come our way. 

Ubaldo dropped out of heaven just for us.  We hope and pray that we dropped out for him too. 

Thursday, May 27, 2010


Today we showered with a hummingbird.  Certain amount of trauma getting to the shower and making everything work and then there it was, the whirring sound of something alive.  I looked, and both of us, hummingbird and me, were a bit startled.  We were showering together.  Jed showering, me washing and the hummingbird trying to decide whether we were friend or foe. 

It was a moment of solitude.  We watch the news a lot. Usually they don't report about good things.  Or simple things that make us feel alive.  Showering with a hummingbird is simple and very much a poke toward being alive and in tune. 

Jed is now going to occupational therapy.  Basically, that's working with the arms.  We've been so focused on physical therapy (legs) that the arms have been ignored.  Learning the system is important while being a quadriplegic.

The system is, if a doctor recommends a certain thing it will be accepted by medicare and provided.  The key is getting the doctor, who doesn't really have a clue what's going on because he has his own life, to write a script for therapy.  That's the key word, "script."  I know a lot about how to deal with the "system" now, but it is really ridiculous.  Many times, when we've needed something, we've just made "demands" and the office manager or resident nurse has responded.  I'm sure if you asked the doctor, he wouldn't have a clue about what he has authorized. 

But, regardless of who authorized it, we are getting it and "it" is good.  Therapy is a good thing.  Perhaps it's best because it provides a structure for doing and improving.  They really don't do anything we couldn't do at home, they just provide a  structure and a destination and a promise.   Therapy is a good thing.  Doctors should just give a blanket okay to this type of thing.  They do adore the power, however. 

But, in the meantime, we have the opportunity, to every now and then live life very beautifully.  Today was one of those days.  We showered with a hummingbird and neither of us (hummingbird or human) felt as though the other shouldn't be there. 

My husband is amazing.   Most anyone in his situation after this long of time would be bitter and mean and self serving.  He is none of those.  Jed, is kind and generous and appreciative.  He is loving and very much loved. 

We recognize the hummingbird as a message from God.  We receive it as, "keep is up, I am proud of you." So, we are keeping it up and knowing that what is ahead of  us will be rich and joyful.  


I'm exhausted this morning.  I spent all last night moving furniture in a huge two story house and fighting with my brothers about where to put things.  It was a dream, of course,  but I woke with sore muscles and  little energy after lifting and fighting all night.    You see, in the dream, we are all going to live together, my brothers, their kids, my parents, and a few other old people.  My plan was to put the old people down stairs and all the young ones upstairs.  My mother thought this was a great plan and I was trying to please her as well as appease everyone else.  In real time my mother has been dead for 30 years.  But she was very real last night. 

I carried mattresses and headboards from one room to another, then someone would come and express dissatisfaction, so we would discuss and move again. 

This is all related to my real life.  We have a two story house and I have been moving out of the upstairs for months, making a bedroom our of a living room and then out of an office.  The upstairs is nearly empty now but things don't have homes yet and are floating a bit about various parts of the house. All this requires tossing and decisions.  None of which are overbearing, just time consuming and energy eating. 

Now, we are planning to go to Colorado for a few months and I have stuff anxiety.  What stuff to take, what stuff to leave, what stuff to have both places.  Stuff sure gets in the way of a  good time (and a good night's sleep.)  Perhaps I have too much of it.  I do believe that is the lesson of  an exhausting sleep.  It's just stuff. 

Ubaldo has paved the way for us in Colorado.  He has found a place for Jed to continue therapy and a new doctor who specializes in spinal cord injuries.  Now we just need to figure out transportation and be on our way.  In the meantime I will deal with stuff.  Colorado will probably be another month. 

Monday, May 24, 2010

We now have a shower that Jed can get in to.  It has been a year since he had a nice shower.  This old house didn't have bathrooms when it was built so the only one downstairs was built in a hallway, much too small for a wheelchair for fit into.

Talking with a customer one day at the shop I was given a recommendation for a carpenter that could help build a ramp to the outside so that Jed could enjoy our back yard. Once again, these guys dropped out of heaven.  In a weekend they put a door where there was once a bay window and buildt a ramp out the door and another to the lover level of the ramp. Our whole house opened up.  No longer trapped in a small little room with a TV and a commode. 

I asked for a bid on making the shower accessible.  Through the roof!!!   "But why not build one on the deck?" they asked.  Why not?  They used the old barnwood we'd been trying to sell, and lots of old doors and windows from the shop.  Wah lah!  A greenhouse/shower.  It's wonderful.  They installed a small water heater under the deck and now I have tomatoes and watermelon growing where Jed showers.  I even sneak out and take a "shower with a garden view" spa experience when I'm sure the racoons are occupied elsewhere.  Water heater: $200, labor: acceptable and appreciated, shower with a view:  priceless. 
So tonight we had it all planned.  Jed would sit in his "jump chair" (sort of like a baby jumper, but don't tell him that) while I watered the plants in the back yard and maybe even had a glass of wine on the back deck.  We put him in the chair,  It's quite a process of wheeling the chair under a large frame and hooking the seat on to springs.  We are usually both tired by the time we get him in it.  Then I pull the wheel chair out and he is suspended by the springs and sitting in a "bag seat."  That's how it has worked for a year.  Tonight we both forgot to hook the upper seat belt and when I pulled the wheel chair out he did a face first flip onto the floor of the deck. 

Luckily he wasn't hurt badly, but there he lay. I managed to turn him over, but without Ubaldo making a trip across town (leaving his pasta to overcook) and helping (basically doing it all), Jed would probably have had to spend the night on the deck with the racoons. 

Obviously our evening plans changed.  This is just a small example of how indebted we are to Ubaldo.  He is a constant giver and gives with a kind heart and laughter.  

Wednesday, May 19, 2010

There are times in life when you just know that you are in the right place at the right time.  It's magic.  It doesn't happen often.  But, I think we are there right now.  I went to a home today to look at potential buys for the store and sadness prevailed.  I couldn't get away from there fast enough. 

That's not what our life is like.  Sure, it's a bit complicated, and sometimes totally exhausting, but our life is clean.  It is sure.  It is confident.  We know we have each other, we know we have family, we know we have friends, we have faith and we look forward to a future. 

Tonight was movie night.  This has been a tradition for some 10 years.  The group has expanded, but the pattern is the same.  Early movie, drinks, snacks and discussion to follow.  Home before 8.  Simple but clean.  It stopped for a while after the accident but started again once we managed transportation and mobility.  So tonight we laughed with friends, we teased one another about heritage, we talked of favorites and we didn't talk about "poor us." 

Poor us gets old.  Who can really carry that for long?  Even the best can only carry it for a few months and then it just gets old.  So, here we are in this magic place.  Right place, right time.  Good friends who can laugh and ignore the "poor us" with either us or themselves, and just talk about movies and musicals and travel and heritage. 

Tonight we brushed shoulders with real heros of war, champions of track, survivors of life's lesser bests, masters of beauty and feasting, rodeo winners and faith warriers.  We are honored to call them friends.  Right place, right time, right people.  Poor us just doesn't register. 

Tuesday, May 18, 2010

So today he went to therapy.  First time in 2 weeks.  It went okay, but he is so tired.  Tired is the word for the dayl  He's tired, I'm tired, Ubaldo is tired.  We work hard at not being tired., but tired just catches up and takes over. Tired can own you.  Tired is a master.  Tired can control everything if you but let it.  Tired is a cruel equilizer.  Tired just is.  The fight against tired is cruel.  Sit, stand, lift, lift again, lift lift, lift. 

Nobody thinks about the mechanics of lifting a leg, or arm, until it is impossible.  Right now lift your leg at bended knee 10 times.  Do it.  And think about it.  Ten times.  It was't hard was it?  But for Jed, it is a major event, a relevation, it is an amazing accomplishment.  The spinal cord is in control.  Yours is doing what it was meant to do, Jed's is not. 

We don't complain about our lot in life.  We just are aware.  We are aware that most people spend a lifetime worring about the unimportant.  It is so clear to us now that our focus needs to be on love.  Love for one another, love for family, love for the history that we have and love for the future.  Love is a well used word but critical in our existance.  Love.  When you say  the word love,  freedom pours our of your skin.  Love..   Empowering and  complete.  Love.  We only get one chance at this life.   We do our best, gather the best around us, and pray that what we have done will be seen as acceptable, but the truth is, none of us really know. 

Jed and I both spent most of our productive lifes as teachers.   Small joys come to us from those years.  That's probably how it should be.  Small joys and short stories.  We have many of them, short stories of children.  We like to think we made a difference, and for some we probably did, but for most we were just there.  We were a stepping stone, a passage, an unimportant memory that will fade.  That is hard to accept, but a truth that will prevail. 

Now, we focus on simple stuff.  How to stand, how to take a simple step, how to to a sit up, how to be upright longer than prone.  We rememeber the expectatons we put on children and we wonder if we could ahieve what we once expected from them. 

We are not bitter, we are just aware.  Aware is a good thing.  Aware  makes us free to be complete. 

Tuesday, May 11, 2010

Jed hasn't been to therapy for almost 2 weeks.  He was doing so good.  Walking even.  On real land, not just in the water.  He was very proud and expecting to be an independent walker by the end of the month.  But then he got a fever.  Who knows what brought it on.  Just a fever.  We got antibiotics and he's better, but now he has lost his walking memory. Sounds funny, but that's what it is.  We have to start over retraining and reminding his muscles what to do in order to walk.  He can't even stand alone now. 

He's been there once, so he will get there again, but it is not a direct line.  Progress.  It's not a direct line from one accomplishment to another.  It's a zig zag and sometimes a complete hault.  I imagine all life is like that.  That is why we need Faith.  Without it, facing a tomorrow would be near impossible. 

I have spent the last few days simply sad.  Sad is unproductive and very self serving, but sometimes it's the only thing that works.  Sad gives away to slothiness and messiness and fear.  Sad and Scared go together.  They have a life of their own.  They sees colors different,  prepare food different,  speak to people different,  even dress different.  Sad and Scared are okay.  Sometimes they just need to be recognized, acknowleged and papered a bit.  Sad or Scared don't live long when they're exposed.  Sad and Scared are friends of the dark.  We don't live in the dark.  Not for long anyway.  We chose light.  We chose hope.  We chose tomorrow. 

So we move on.  Tomorrow we will go to therapy and try to regain what the fever, Sad and Scared took.  We will try to rebuid hope and personal goals.  Tomorrow is a new day. 

Tuesday, May 4, 2010

Have you ever been bit in the ass by a spider?  Let me assure you that your energies will be focused on your bottom end for quite an extended period of time.  Imagine the circumference of a drinking glass as hard as a rock, flaming red and very painful.  Of course, it's also right where you sit. 

No more information is needed.  That's why I haven't written.  Any free time has been spent soaking in a hot salty tub.  One night while I sat soaking I looked differently at the stainded glass window that is above our tub and became so appreciative of the unknown hands that made it, that I was brought to tears.  I soaked out the pain as I examined the beauty and detail that had gone into the window at another time and in another country.  All I know about the window is that I bought it from a local antique store (before I was the best in the county) and  asked Jed if he would "cut a hole in the wall and put this window there."  I had undeveloped appreciation of the love and skill it would take for him to complete the task, but he did.  Because I asked him to. 
But, as I lay there soaking out the poisens of an eight legged intruder to my underwear, I was overwhelmed with the beauty.  Not only the beauty and symmentry of the window, but the beauty and symmentry of life itself. 
Once, my Jed could lift a huge and delicate window, carry it up a trecherous stair, cut a hole in a wall to precision and fit the window that I had picked out fresh off the boat from "somewhere in Europe" into the perfect spot.  It's there now for me to enjoy when life, or spiders, slow me down a bit.  There's beauty and balance in all that.  I like to imagine the person who put lead to colored glass and while I do both spider pain and life"s uneasiness soak gently away. 
Now, Jed and I celebrate self-standing.  Practice for yourself for a moment and think about what it takes to stand up.  We do it without thought.  Jed has to concentrate and demand performance out of every muscle in order to make the self-stand possible.   Even then it is fleeting.  One minute, two, once we made five minutes.  He was used up.  He had put everything into 5 minutes of being upright without help. 

We're a stained glass window.  One day we will be a beautiful example of perserverance and choice, but now, we're just pieces of broken parts trying to bond and find the connection that will make us beautiful.  One day someone will be soaking away their pain and will look at us and be brought to tears for the beauty of creativity.  Until then we will fit the pieces we have in to what we can.