What's it really like?

I talk on and on about how blessed we are.  But what's it really like?  How does our day go?  Well, we wake up because Jed is in pain.  His nerve pain is unmerciful and a shirt or a blanket or a pillow touching an unmedicated spot brings this strong, "I'm not afraid of anything," man to tears and cries of anguish.  Pills are critical and take hold quickly.  After about 20 min. he is able to have breakfast and think about the day.  Bed bath is the norm.  We have an outdoor shower built for him but the winter, even though it is California, keeps us in, not out.  So, bed bath and dress.  Then breakfast.  It's now about an hour after we have risen.  Breakfast and Fox Business.  I know more about the price of gold than I ever thought possible.  Then it's teeth brushing.  He wants to do it himself, but it's a challenge.  So, we prop the pillow, place the arm, place the electric toothbrush and go.  Often he drops it.  Often he cusses.  Just part of the day.  Grip.  He has little grip.  How can you hold on to a toothbrush with no grip?  Somehow we get through the process feeling accomplished. 

Then we face the day.  "On your side?"  Since he had the shingles, about 4 weeks now, he hasn't had the energy to do anything but get through the day.  No standing practice.  No walking practice.  No standing machine.  We just decide whether he should be on one side or the other.  I guess it's depressing.  He was making good progress before, but we try to realize that this is just a set back, not a pattern of life.  So this is what it's really like. 

And, on top of it all he just got news that his forever friend died.  That happens to us all, but Jed has no power.  No power to visit.  No power to greet.  He just has to internalize it all and turn to the other side. 
Me, I'm drinking brandy.  That's what it's really like. 

But, in the midst of our daily ritual of managing pain and ignoring reality, we have fun.  We visit with friends, we argue about movie trivia, we tease Ubaldo.  This life sucks.  But it is quite remarkable at the same time.  We are blessed.  Probably no more than the rest of you, but we have been put in a position where we are forced to realize it. 

Why Try So Hard?

Christmas is out of our house.  Tree out.  Santa out.  Wrapping out.  Lights down.  Gone.  Short lived, but lovely.  Sometimes I wonder why we try so hard.  I remember mom putting up the storm windows in the fall.  They were windows, lined with heavy plastic.  She changed out the screens and put up the storm window with regular ritual, just like we pull in a Christmas tree and bangle it with baubles.  It's stuff we do to mark time.  Sometimes, like the storm windows, it has a practical purpose.  Sometimes, like the Christmas decor, we just do it.  We do it because our families before us have done it.  We do it because all the stores tell us to do it.  And sometimes, we just do it because it makes us happy. 

This year Ubaldo did it.  He even put a laying down tree on top of a cabinet, hooked it up to remote and wa la...Christmas in our room.  Our room is where Jed spends most of his time.  TV and comfortable bed.  That's our room.

This year we didn't make church once in December, not even Christmas Day.  Jed got the shingles and it set him back a lot.  His stamina is limited.  One Sunday we spent all day in ER another all day in bed.   But what we got this Christmas was real.

Jed's very good friend called us from the hospital.  "Just got a heart transplant."  Another loyal forever friend died.  My dear friend who's more family than friend, came from Macedonia Peace Corp and we were just regular together.  Regular is very very good.  And then, two cousins, sisters, popped into my life after some 30 years.  We touched one another with blood oil.  Soothing and assured. 

I am reminded, through them that my parents were remarkable.  It is good to have others vouch for my memory.  I guess that's why we try so hard.  We try to live up to our memories.  To hold on to who other people remember who we were. 

So now that Christmas is out of our house, I feel very Christmasy.  Warm and fuzzy.  Remembering and hopeful.  Jesus didn't come to this world so that we could decorate our homes and pass gifts.  He came to make us know that we have a purpose.  That we are important and that God is the ultimate answer.  We try so hard because we are human, we forget, we try to remember, we forget, we try again, on and on we go. 

It's our journey.  It's good to remember our journey. Jed and I have been remarkably blessed on our journey and it's good to remember.  It's good to be reminded by friends and family, and it's good to try hard to keep the journey on a positive path. 



I

Dreams

I don't think there's a person in the world who doesn't dream about something better than where they are in life.  Last night I dreamed I walked to Seattle.  So what on earth could that mean?  I was walking and walking, getting very tired.  People I knew would stop and ask me if I wanted to ride.  I said no, that I was fine walking.  But, in my dream I stopped and wondered why I had refused those rides, because I was so very tired and knew I wouldn't make Seattle in time.  In time for what I don't recall.  So, what does it all mean?  

Maybe I'm unconsciously stating that I can do this.  It will be hard.  It will take most of me, but I can do it.  It's nice to know that there are people who will offer help, but right now I don't need it.  I wonder if that's what it means?  There's a sign in the shop that says, "happiness is a choice."  I believe in that powerfully.  We can choose.  Choice is one of the great eternal gifts.  We can choose happiness.  We can choose God.  We can choose pretty much anything we want to choose.  A bit of a curse at times, but an amazing gift.

So, I dream of Jed walking.  I dream of him happy and competent.  I find myself at times settling for his handicap.  Settling for bedriddenness.  But I dream of more and I know he does. 

Recently we have changed our approach to this reality.  Less therapy, more at home focus.  I'm conflicted.  It was good to have a place to go and someone to meet for therapy.  Now, we have to make choices at home.  Choices to stay in bed or get up and work at standing.  Choices to watch TV or practice walking.  Choices. 

Jed's progress has not been linear.  It's not been a straight upward line of progress.  Rather, it has jumped all over the place.  Great progress, giant set back, major breakthrough, illness, etc, etc, etc. But he continues to be able to do more than he once could. 

I feel guilty and convicted often.   "If I had gotten better doctors, if I had not given up the Blue Cross Insurance, If I had been home with him more......," bunches and bunches of should-upons.  But in all my inadequacies, I still dream.  I still believe that Jed will walk and function for himself.  He's beginning to approach life from a "this is all I am" approach.  It's sad to see him begin to give up.  He wants more in life. 

Bowel Program

Most of us don't talk about it much, unless with our very good friends, and then it's rather clinical and nutritionally based.  It's quite important, however.  Too bad there's such a shame stigma about the poop thing.  Most of us have a poop memory that just sits there, on our minds, and we not willing to really face it.  But the truth is, when it goes in, it's gotta come out. If it doesn't, well then, there's a real problem.  What most of us don't do is really think about it, we just do it, take care of it privately ourselves and then walk about the rest of our day as though it didn't happen, or at least wasn't that important.  Not really much that is more important. 

When Jed was in rehab the nurses made a big deal out of the "bowel program."  Program?  I was a bit confused.  Me, coming from a music and teaching background, a program was something we invited people to and celebrated.  I can see her face still, the night nurse smiling happily as she put on her gloves and pulled the curtain around Jed's bed.  "I will do the bowel program tonight....,"  leaving me to wonder just what was going on behind that curtain.  

So, here we are more than two years later.  I know stuff now.  I probably knew it then, but that old "shame stigma" just didn't allow me to think about it in any constructive way.  Bottom line (joke, bottom) is that a healthy body needs to poop on a very regular, if not daily, basis.  Now how do you do that when you are a quadriplegic and have little or no feeling in or about the bottom line?  With help.

Now we have a "bowel program" daily.  If this is not the type of thing you like to read, sorry, but this is our life.  Take stalk of the beauty of your body and the comfort with which you manage your private poops.  Jed's body still needs to poop, so we have a program.  He can't really feel when he needs to go or when he has gone for that matter, but bodies are predictable so if we do the poop thing at about the same time each day, well, his body just remembers what to do.  But we have to remind the bowel of  it's job each day by giving it a suppository and waiting to remind the body of it's purpose.  It has a simple beauty of it's own. 

The bowel program takes about an hour each night. About that of any good program, huh?  Suppository, wait, transfer, wait, clean, transfer, clean up.  Sometimes I just think, "please not tonight, I just can't tonight," and then I'm reminded that the program is set, the body has remembered, and Jed's health depends upon this program to not only happen, but be successful. 

We don't talk much during the hour, but we both value the other.  When you stand at the alter and say "I do" to "for better or worse" you just don't think about this kind of thing.  This has to be very hard for Jed.  He was always a very private man.  None of this door wide open stuff for him, and now everything's wide open.  He often asks for small favors, like a shade pulled or a blanket on, "to protect my dignity."  But we both know that this is a health thing, not a shame thing or a dignity thing.  It's a necessity.  And so the marriage vow increases in power.  That fresh love grows more powerful with time and circumstance.  There's lots of things I would hope to never have to do, but when you are put in a place where you do it or lose something very valuable, it's a no brainer and becomes okay, just part of the program. 

Thanksgiving Memories

Growing up on the farm set the stage for loving Thanksgiving.  The harvest was in.  The cattle back from the South pasture, the crop was celebrated and tucked neatly away in bins and storage places.  The midwest weather was somewhat predictable...snow was coming and it was time to hunker down.  So, all the animals were housed for the winter.  All the corn was picked and ground up to fatten the cattle.  All the cucumbers were neatly stuffed in jars to become pickles, and all the family gathered 'round the piano.  Childhood memories.  Sketchy.  Wonderful. 

I grew up and moved away.  Thought something better was out there.  Little did I know.  But, on Thanksgiving, everybody came back.  My parents made it wonderful.  Mom in the kitchen making pure magic.  Dad on his machines showing the children wonderment. 

Many Thanksgivings blur into one wonderful memory.  Dad on the tractor pulling a wagon of family.  Everyone.  The Corporate Vice President, the business owner, the music teacher, the California queen.  All them and their bitty ones too.  We all climbed in the wagon and took a ride.  Great grandma had to be lifted on.  Round and round we would ride. "Over the river the through the woods..."  There was no real river and no real woods, but the flavor was there.  We rode with joy over the hills of the land that was ours. 

The children connected.  They connected to who they are, where they came from, where they were going, and who rooted them.  Those children are now adults.  Most have children of their own and are giving them their own version of the grandpa wagon ride. 

Farm heritage is dirt blood.  It's real and complete and will grow in the soul like a seed in the dirt.  It's good.  Sometimes hard, but good.  It's very close to God.  God and dirt flow through the farm girl's reality with fluid exchange. 

So, that's why I get teary on Thanksgiving...because I've been so very blessed and this day reminds me of  wagon ride experiences. 

Years have passed.  Mom's magic stopped suddenly almost 30 years ago.   Dad's more recent, but the heritage, the connect, the knowing, the dirt knowledge, the corn power, the hills and the hunt, they remain. 
I am so very thankful for the family God gave me, for the one He gave my children.  Thanksgiving brings tears and laughter and joyful memories. 

Today was different, but lovely. Jed and I had a day to ourselves.  I made soup.  That makes me happy and connected to family.  Margaret brought us a plate of turkey and all the trimmings and we sat in bed and ate her deliciousness.  We practiced standing and then went outside.  Built a fire on the deck and talked to loved ones.  It was nice.  Wagon rides are those kinds of things that happen without knowing how treasured they will be.

Giving Thanks

We set aside a special day.   A Giving Thanks Day.  We, being USA, and I think, Canada too.  We set it aside to celebrate who we are.  Where we are, and who we have in our lives.  So, here is my Giving Thanks Letter. 

Dear Everyone who has ever touched our lives,

 Here it is 2011 and I'm 63 years old.  Jed just turned 72.  As I write it, I find it shocking that we are that age, but we are, and we have cumulative 135 years of knowing people and doing things which have brought us right here where we are.  And that's what it is, knowing people and doing things.  People from our childhood, people in our family, people we've worked with, people who we have passed by or noticed, people who have worshiped with us or fought with us, or divorced us, or made love with us.  Jed got a phone call this very day from a childhood friend who is dying of cancer.  The memories flowed and the chest welled up. 

I have flashes of people I've noticed and never spoken to:  the legless/armless woman who breathes into a tubed wheelchair to be a part of the world, the bedragled sheep herder in Idaho, the many weary  road sign holders who smiled and waved us on.

I wonder about people from long ago; the childhood friend, the college diva, my first principal, the professor and the typing teacher.  All these and the thousand others have molded me.  I honor them on this Giving Thanks Day.  My brothers, parents, assorted family...some quite lovely, some very interesting and some downright remarkable. Kids and grandkids fit here.  And then there's the friends.  The stick to you like glue friends that no matter how much time goes by we're familiar and warm.  We're forgiving and accepting.  We know the truth about one another and love in spite. 

On this Giving Thanks Day I honor them all.  It has been them who have made me me. I wrote a song for my daughter's wedding.  Some of the lyrics say, "If you've ever pondered the ways and the wonders of why we all do what we do, then surely you're touched by the mythical magic, this love has been blessed by you."  I'm into that...the ways and the wonders of why we all do what we do.  I've pretty much decided it's simple.  We  do what we do because of the people who have been in our lives.  Jed and I have been blessed by amazing people. 

So, on this Giving Thanks Day, I give the thanks to God for passing these people through my life, or me through theirs.  It's been a lovely ride.  One I hope continues for years and years. 

The stuff that we're doing now is made bearable by the reality of the people we know.  The standing practice, the pain, the pills, the walking effort, the practice, practice, practice to do basic things like brushing teeth and eating.  It's okay.  It's very easy to look at what we don't have.  And with us, it's arms and legs.  I've been a little teary lately because I so miss who we were, Jed and I.  But, who we are now is quite amazing.  It's amazing because we have amazing people tugging at us and pulling us through.  Some are therapists, some are neighbors and family, but most are friends.  We are very blessed.  Amen. 

How Do You Live A Life?

I had an amazing childhood.  Nurtured.  Loved.  Accepted.  Stuff of most peoples dreams.  I had an amazing heritage.  So how do you live a life after that?  It's good to start well.  My start was so good  that I didn't know bad existed.  But then you have to live it yourself.  Try as I will, my attempt seems a bit lacking.  Some would say I've done good.  Some would not agree.  The only one that need evaluate is me.  Me.  Myself.  My life.  Mine.  So, how do you live a life? 

Educate yourself?  Did that.  Marry well?  Did that twice.  Make good friends?  Check.  So, I'm sort of smart, have great companionship and wonderful friends.  Why then do I sometimes feel at the bottom of the food chain about to be eaten by anything that eats?  How do you live a life? 

Sometimes life is just complicated.  Sometimes its just hard.  And sometimes it unbearable.  We move on with the memories of being given a good start and making good decisions, but knowing our reality.  The contradiction is sometimes too much to bear.    

Jed and I have both tried hard to live a good life, be good to people, help people out, love each other and respect and appreciate our heritage.  We've lived a good life.  But, here we are, every day and night, dealing with the truth that he is a quadriplegic and I am a care giver.  We both had a great start.  We both educated ourselves well.  We both have great friends.  We both end each day with a little misery on our shoulder. 

Truth is, it doesn't matter.  Very little matters.  The only thing that seems to matter is peace in the heart.  The peace to face another day when hope seems bleak.  Where that peace comes from is up for dispute.   Some would argue heritage, others would say, God.  Others would argue that the self has the capacity for creating peace.  How do you live a life?  With humility and awe.  It is so very precious.  However it's dealt you, it's yours.  Make it beautiful. 

New Wheel Chair

It was two years ago this month that a representative came to our home and measured Jed for his new custom wheelchair.  We were naive and believers in the system, so expected all to go well and waited paitently for his chair to be manufactured.  We were told that it would be a few months. 

After more than a few months we followed up.  Lo and behold they didn't even know who we were and had lost all the paperwork.  This started a scrambling game that involved three wheelchair companies, lawyers and insurance companies in two states.  I can assure you that we are no longer naive. 

I had to report one company to Medicare Fraud for billing Medicare without providing us a chair.  After months and months of dealing with the fraud and finally being released by Medicare to pursue a new chair, we found ourselved in a insurance claim issue related to a little old lady in Colorado who ran into Jed while in a loaner chair. 

So, two years later he got his new chair.  This one is his.  It was made especially for him based on his measurements and his needs.  It felt like Christmas to me.  The guy who delivered it seemed like Santa Claus and I was happier than you can imagine.  I felt like I had been to war, came home a hero and had a fine limo to ride in. 

Jed, had a little bit different response.  "It's okay."  "It's a little harder to work with."  I'm silently screaming, "You've got to be kidding.  I fought wars for this damn chair.  It's got to be perfect and you have to love it!" 

It's now like the day after Christmas.  Tree is bare and gifts are opened and imperfect. 

It's just that a chair can't fix what is wrong.  The chair is good, real good, but Jed still can't do for himself.  He cried the other night because he can't brush his own teeth.  And I wanted him to be happy happy joy joy with his new chair.  Yes, it's good.  Yes, we are go very glad that this battle has been won, but we have so many more to fight.  I get it, why he wasn't so completely overjoyed.  I get it.  Maybe I am still a little bit naive. 

Daughters

When she was born, she was perfect.  I looked at her and couldn't believe that she really happened.  Everything about her was perfect.  The years of her growing tall were vital to my life.  She gave me breath and purpose.  We both loved and hated one another.  We are so much alike.   She was everything I wanted to be, and I was everything she needed.  Mothers and daughters.  What a breath of womanhood.    I'm so sorry that I didn't let my own mom know what a rich and wonderful heritage she gave to me. 

So, now, she's getting married. My daughter, the bride.   I wish and pray and hope for a perfect life for her.  Being a parent is a very hard job.  We want to protect our children from all the pain and hurt we've gone through.  We want them to just "flow" through life happy and content.  We want, we want, we want.  So much of life is a decision.  We can decide to be happy or miserable.   I wish for her happy decisions. 

Moms and daughters have a very important roll.  It's written in stone.  We will support and lift one another in wonderful times and. when life turns black.  we  will cry together.   It will be hard on both of us, but it will be rich. 

But now, I thank God for my daughter.  I thank God for Jason.  Angie has waited a very long time for a life long love.  I pray that their love can withstand the stuff that comes to us.  As the mother, I want to say,"I will protect you from anything that isn't perfect in your life."  But I know that life will happen to her as it has happened to me, so all I can give her is my love. 

Being a mom is the most remakable thing in life.  I'm a mom.  Oh, my God, I am so thankful for the privelege.  She was perfect when she was born and she is perfect in my eyes now.  I wish for her a roller coster life. 

No matter what you do

Sometimes, no matter what you do it's wrong.  How can that be?  I was raised in a very protective environment (on a farm in the middle of Nebraska.)  I was led to believe that if you worked to do the right thing, the right thing would come about.  But then, maybe that wasn't the lesson I was to learn as a child. 

My parents were amazing people.  They worked hard, were self sustaining, and raised the four of us with unseeming ease.  They gave us a heritage that has power.  It's connected to dirt and sweat and honesty.  It's connected to sky watching and tractor fixing and church going.  Mom used to say, "the week just goes better when we go to church." 

But I remember times when no matter what they did, it just didn't go right.  Once dad extended himself beyond his imagination and bought a prize bull.  The bull had a strong will.  Dad needed it in the south pasture and the bull just wouldn't go.  So, dad harnessed the prize bull and wits to hoofs they battled the quarter mile slowly and determidly.  Dad won.  But, once in the pasture of cows galore, that darn bull heaved and died. 

Now that was a big one.  Prize bull.  More money than dad had ever spent on a bull.  I think it almost killed my dad, but instead we had amazing steaks for a very long time.   Sometimes, no matter what you do it's just wrong. 

I suppose the reason I just keep going is that I know these prize bull experiences are few and far between and it really is true that if you just keep on going on, trying to do the best you can, things will work out. 

Life isn't easy for us.  Sometimes we pick at each other because, why not, who else can be blame for an imperfect life?   I'm thankful for the heritage that I was provided.  Sometimes, the hail would ruin the crop, sometimes the rain wouldn't come.  But we always managed.  If the bull died, we ate it and moved on. 

Tonight has been a no rain, hail, bull dying night.  But, we will move on.  Because, no matter what you do, sometimes, it's just wrong.  But there's always tomorrow and some wonderful steaks to be had.  

Life Goes On, And On, And On....

So here we are, a week from the auction of our home, and what are we doing?  Planning a wedding, looking forward to the (two years in the waiting) delivery of a wheelchair, setting up a "gym" in the sunroom for walking, meeting folks to buy their stuff for the shop and ignoring what lies ahead.  I don't know if it's faith, or hope, or mystery, or belief in the system or simple exhaustion, but we just keep on keeping on and don't really look at the dark side.  We've hired a lawyer, he says he's filed a suit to stop the auction, but, we don't know what lies ahead. 

But today I went to a woman's home who, two years ago, was a blithering mess of pain and nerves and anger.  Today she was confident, beautiful and looking forward to a beautiful new future.  Life goes on and on, and on.  

When Jed and I first started our lives together we spoke of mountain tops and deserts and valleys (all symbolic of life experiences.)  We agreed that we wanted life on a roller coaster not a merry-go-round.  Safe as it is, a merry-go-round is just boring.  So we lived life on the edge.  And we had fun.  Lots and lots of fun.  We took the quick turns and the slow climbs as part of the exciting ride.  When Jed fell, we were at the top of the ride.  We had climbed and climbed and climbed, almost to a stop, but we were there, right at the top, where the ride was to be glorious, and then he fell.  The ride has been trecherous.  Sometimes I think of the merry-go-round with envy.  Safe seems rather nice now, given our pending future.  But, we're not merry-go-round people, so we will prepare ourselves for whatever ride is ahead and in the meantime get on with life. 

My daughter is getting married next month.  My heart is full for them.  She has chosen well.  They will have to decide how they will live their lives, merry-go-round or roller coaster....who's to say? My prayer for them is that whatever the choose, the choose together.  Life will go on and on and on. 

Let Go, Let God

Don't you just hate this title?   Well, I do, but I do...that is, "Let go, let God."  I just have to,  because I've tried to control it, life, without the, " let go,"  theory, but I just get mixed up and messy.  So, here's today. 

I sang at church today.  I can sing and enjoy the experience, so...anyway, Jed decided he didn't want to go.  That was fine and I took off to church to sing. 

Something happens when I go to church.  It's not the cross, or the robes, or the litergy.  It's the people.  I sat there, with a bit of an attitude, (like," life is worse for me, you guys"), but I watched the people.  Gradually they came.

These are people I've known for 23 years.  People I've sang with and laughed with and played with.  But the common element is that I've worshiped with them. 

What I was awed by today it that they were there.  They continue to be there.   Sunday morning.  They are there. 

I looked around and with the exception of maybe one, everyone is in grief.  Everyone has a spouse in ill health, or one that has died, or a pain unrepairable through divorce or children who just didn't cut the mustard. (I've never liked that phrase.)  Then there's the ones who are barely getting by with their health. 

But, they all are dressed up.  They all are there at 9:00 in the morning.  And, they all act like they aren't having any problems.  Shit.  We ask for joys and concerns and everybody is simple.  (A friend has cancer, a mother fell, golly gee, somebody has a birthday, etc.)  Nobody is screaming out, "this is awful, help me!"  We pray a simple prayer and we all go home. 

But, somewhere in the awkwardness of humanity, we become human.   I look at everybody.  They all have amazing trials and they pray for help and guidance.  It's the place where it's okay to silently say, "I can't do this without something bigger than me, and I choose to call it God, and I choose to be here with these people who I feel safe sharing a small part of my life."  That's what makes church good. 

So, skeptic that I am, I say, there are just some times when you have to say, "let go, let God."  The people that I see in chuch know that, and now, so do I.  Sometimes it's just too tough to do it alone, and that is when you just take a deep breath, go into another space and place, and allow the Power that we all know is there to take over.  

I guess I  have to do that tonight, because a possum just walked into our house and I have no idea where it is, so........................

Modification

Finances are tough for us all.  I'm an educated person, but It seems you need a doctorate in finance and work full time on making everything work.  Jed and I have been responsible people our whole lives.  We have extended ourselves financially over and over again for others.  We have been blessed with the opportunity to do just that.  We had good jobs and came from supportive families. 

Now everything is different.  Since the accident the bottom fell out.  We've lost almost everything we had and are looking at loosing more. 

Books and books could be written about these past 27 months, but today I'm going to focus on our home. 

We were fat.  We were risky.  Some would say we were foolish.  What ever we were, we believed in our ability to make right the risks we made.  And then he fell.  We were deep into credit card debt and mortgaged our home to finance a remarkable venture which is now gone along with our credit. 

After the fall and once I got a handle on our new life, I sent hardship letters to all our creditors.  Everyone has worked with us and we are completely out of debt.  Except for the house. 

So here's how it has gone, for 27 months.  After the hardship letter, the mortgage company advised me to not pay for 6 months, and then they could give me a modification.  So I did what they said.  Then they asked me to fax them what ended up about 4 inches of paperwork.  Which I did.  Then I did it again.  Then again.  All because they said they needed to "get it to the right people in their company to help."  Then they told me to pay the mortage for 6 months so they could see good faith.  So I did.  Then they told me they couldn't help me because I didn't make enough money.  And, the mortgage company and I have played this game now for 27 months.  They come back and say they'll try this program or that program and I might qualify if I just fax another pile of paperwork and pay another chunk of money.   Finally we hired a lawyer and gave him $4000 that I would much rather have paid to the mortgage company.  The lawyer gave us some assurance until last week when we got a new notice of doom on its way.  The lawyer says, "relax" we've got time.  Relax. 

In the meantime, I've put out a bunch on money adapting the house so that Jed can take a shower and get in and out of the house in his wheelchair. 

Something is really wrong here.  I'm not expecting miracles, but it's just really hard to, "relax"  when I've had good faith this entire time.  Shit, if I thought they wouldn't help by modifying the loan we would have walked away from this place months ago and put all the money that I've put into adapting the house into a rental that I could afford. 

Does anybody know what I should do?  If you say pray, I'm doing it.  If you say work harder, I'm doing it.  If you say, believe in the system, it's fading.  Let go, let God is about all I can come up with.  

Help Me!

Sometimes we have good days.  Sometimes we don't.  It's the nights that get dark.  Jed gets his pills.  Pills to sleep, pills to manage pain, pills to manage spasms, pills, pills, pills.  They mess with him.  They're supposed to.  They do what they're supposed to, but they do more.  They send him to another world.  Sometimes it's good.  Sometimes it's not. 

Most nights I hear, "help me."  "please, help me."  Shit.  What am I to do.  He is asleep, sort of.  Asleep enough to snore.  But he is miserable.  He wants help.  I massage his head.  Give him cold clothes, turn him over.  Nothing really helps, because the help he wants I can't give.  So, I spend lots of nights just listening and writing. 

Tonight is especially bad.  He can't breathe, he can't move, he can't hear, he can't, he can't, he can't.  But he continues to ask for help. 

When you take the vows, "for better or worse" you don't spend much time thinking about what that really means.  This is worse.  We've had lots and lots of betters, but this is worse.  Our betters have been so good that the bank is full and able to pay out on this. 

My daughter is about to get married.  I am so happy for her and know she has chosen well.  She will stand there in her elegance and agree to, "for better or worse" because she is blinded by love.  Good thing love does that to you.  Worse is pretty unpleasant.  Too bad it's not, "for better or as long as I want to," or "for better or until it gets hard."  But, the truth is, as hard as this is and as much as I would like to complain, I have the easy part.  I get to stand up and walk out if its too tough.  I get to get in the car and go for a drive, I get to go out to the back yard and breathe the evening air.  I don't have it so bad. 

When Jed calls out, "help me, please help me," I die just a little because I can't.  I've tried, believe me, I've tried.  But I just can't. 

We have an amazing friend from church who has seen a side of life that most of us never will and all of us hope we won't.  He is almost 90 and was a prisonor of war.  Now he brings us grapefruits that he picked from his own tree and thanks me for taking care of Jed.  After all he has been through, he has simplified life to, "Jesus loves me."  He asked me to sing just that for his funeral which I have agreed to on the condition that he will sing at mine.   If I can take one thing from his elegant life, it is that when we ask for help, it may or may not come, but the ultimate knowledge of the love of God is ever present. 
So, tonight, I will sleep.  "For better or worse?"  This just might be the better, because life's stuff gets a little bit more clear when it's dark.

The Beach

Jed sailed the South Seas before I knew him.  He watched the whales rise by his ship, drank the juice of barnacles stuck to his ship, and kept watch through the night as his ship sailed through and to islands with exotic names.  He tells stories of drinking local libation from the shell of a coconut and falling completely in love with the deep, deep blue of the sea.  That was before he fell off the ladder.  It's been two years now.  Two years of spending most of his life either in bed or in therapy.  Two years of knowing the dreams aren't over.

Yesterday we went to the beach.  We ate chowder on the pier and went to the very end to watch the glorious sunset.  We talked about negative ions (that scientific explanation of why we feel so good at the beach).  We met an old couple from Oregon who were celebrating their 59th anniversary.  We lived life big. 
Jed stood at the very edge of the pier and looked out over forever.  He breathed in the sea air and remembered.  And planned. 

And when we got home, Jed said, "I want to walk in the house."  He's been doing some walking and we knew he could probably be successful, but we were tired.  Somehow we got the energy to say, "Okay, Jed, let's walk."  He did it.  All the way from the car, up the ramp, in the house and to the bed.  He was exhausted and has slept a good portion of today, but he did it, and he knows he did it, and knows he can do it again and again . 

Two years isn't such a long time.  It's time to rest and heal and make plans.  His plan is to walk.  And walk he did.  The sea air helped.  It brought back memories of living life free and open to possibilities.  His arms and legs are waking up.  It's very slow.    I spent 30 plus years being an elementary school teacher.  I spent many a day explaining to collegues that I was a process person not a product person.  Thank God.  The product is not yet perfect, but the process is amazing and life enriching. 

Monroe

Monroe was born on March 23.  He wasn't alive.   We had such plans for him.  He had plans for us.  We wanted a little baby to love and hold and cuddle and rock, teach ABC's and rejoice when he walked.  He came with a different plan.  I cried for days when my plan didn't work out.  I cried for me. I cried for his mommy.  I cried for his daddy.  I cried because we wouldn't know him.  And then, I realized we did know him and he knew us.  He was the spiritual connection between us all.  He made us wake up and say, "oh, my, I so Love you!"  Monroe had a peaceful and highly respected visit to earth and his little life has made all the difference in everything.  He helped us recognize Love.  He helped us open our hearts and communicate.  He helped us know the value of life and the value of each minute and decision. 

Monroe was a little bitty boy who came through the womb of my womb and into my heart.  Nothing will be the same.  It will look the same and sound the same, but it will not be.  Monroe was here.  He was.  He was loved. 

Do Mirrors Lie?

The person I see in my mind and the person I see in the mirror are two different people.  Care giving takes its tole.  Be aware, we will all become care givers if we're lucky enough.  I mean, really, what's our option.  We either "grow up" to give cares to someone we love enough to give ourseves to, or we don't love enough to give of ourselves. 

So, in spite of the mirror, I move on.  Tonight I'm marinating fish.  Fish that was caught by a determined brain cancer "surviror" who fought wits to fins in a battle of "who's gonna live longer," and he won.  So, we will watch the Oscars with a new band of friends; ones who battle life daily, ones who have their medical marijuana cards and truely need it, ones whos hearts have said, "pay attention!" and ones who come with unawareness that life is a game of tricks.  We will eat that fine fish who gave his life to validate another, and we will laugh and poke fun of the mirror.  We all see ourselves different than others do. 

Mirror, mirror on the wall.  Truth is Jed and I have a remarkable life.  This is not what we planned or hoped for, but it is remarkable.  How do you evaluate a life, marriage?   It has to be in passion. Passion for saving what you have, and moving to a new growth place; leaving the old stuff behind and being open like a flower in rain to the new stuff ahead.  New vine.  We've been prunned.  Prunned of the old self.   Newness is a fresh baby not to be killed. 

My dear friend told me to get busy writing, so here it is.  Life is good and rich and worthwhile, and whether you are the catcher of fish, or the giver of care, or the see of it all, life is good. 

And God is in control of it all.  We are receivers of the big picture.  For me, the mirror says, " you are getting old and very fat,"  but it's okay.  This care giving experience that I have been provided,  has been glorious.  I have been taxed to my capacity as well as moved to the greatest emotion humanly possible.  We move on toward something beyond ourselves.  Anger, exhaustrion, indiffrernce, and self attack are lurking ever present.  But, the gift of knowing that we have loved, and been loved by someone enough to give ourselves completely is ever present in the grit of daily stuff. 

So, the person I see in the mirror and the person I see in my mind need to get together and have a conversation.   Hopefully it will be with a friend or two on a walk. 













 

How's Your Husband?

Human communication is weak at it's best, often awkward or careless, but seldom pristine.  Flawed as it is, it's a necessity for healthy existance.   So we keep trying.  Me, I get, "how's your husband?"  Well, it's kind of them to ask, but I don't think the askers really want to know.  So how to I answer?  Do I say, "He's doing fine",  or "He's making progress", or "About the same", or  "He's doing some walking", or "Amazing"?  Each gives a message that's part truth, part upper lip, part, "You really don't want to know." and part "I don't have time to really tell you how he is. 

So, how is my husband?  He's still a quadriplegic.  He still is totally dependent on others for everything short of a TV remote and a wheelchair joystick.  But that doesn't give an adequate picture, because that sounds pitiful and sorrowful and that is not how my husband is. 

On top of not being able to do anything for himself, my husband is in almost constant pain unless regularlly medicated.  But that doesn't give an adequate picture, because that sounds miserable and adgitated and gruesome, and that is not how my husband is. 

So, how is my husband?  Positive.  Supporting.  Encouraging.  Faithful.  Stimulating.  Imaginative.  Challenging.  Free thinking.  Creative and fun.  Which translates to "amazing." 

He gets physical therapy three times a week for an hour.  During that hour he walks.  Some days he walks 10 steps other days 60 or more.  He has no awareness where his feet or legs are.  It's called propreoseption.  He just doesn't have it.  So, walking is laborious.  It's a thinking as well as a physical challenge.   But he keeps at it.  He gets a little better, then not so good, then a little better.  Over and over, but the progress is real.  Minature but real.. 

He gets occupation therapy 2-3 times a week for an hour.  During that hour he picks things up.  Pegs, wads of newspaper, rocks.  He practices the movement of fingers and arms.  He tears pages out of magazines, wads them up and throws them in a container.  This is so strenuous that after 2-3 pages he's exhausted.  But he has the energy to smile, say thank you to his therapist, control the joystick to manuver himself to the car and get back home. 

We do accupuncture to stimulate whatever that can be stimulated, we do reflexology to keep the energy flowing, he is trying shots to help with pain, and on top of everything, he still makes me laugh and believe in the God which is the knower and controller of all. 

So, "How's your husband doing?"  Awesome!  He's my great gift.  I get tired.  He lifts me up.  I lose faith.  He builds it back and helps me find it.  I get discouraged.  He gives me kindness and joy.  I get scared.  He prays with me.  "How's my husband?"  No one could do what he's doing as well as he's doing it.