Just sharing

[kitkatz]

My hubby called me eccentric the other day.  Oh well.... I told him to wait a few years!

[The Wife]

Would you like me to send you a couple of bells?   

[The Wife]

I lost my wallet yesterday.  Something I can't really afford to do either.  We live on disability and the money lost was about a weeks worth of groceries.  Fortuantely, only cash and my bank card was in this wallet.  The rest of my id was in another wallet.  And fortunately, we have a lot of food to last a month until we're paid again.

Losing my wallet was something else added to everything else and I became angry with myself.  I wanted to do something for my hubby for Christmas, and now that's gone too.  I wanted to be like others, just for one day, wrapping gifts and feeling the joy that giving brings.

Christmas...people buying gifts for each other, going here and there, celebrating in ways they celebrate.  My partner is stuck inside. 

We were invited to my son=in=laws mother's for Christmas Eve but with the unusual snowfall and his inability to get out without great effort, we won't be able to go.  Again.

How do we get through this festive season when it feels anything but festive?  How do we find comfort when we don't have money to buy those we love gifts?  When everyone is frolicing out in the snow while our loved ones have to stay inside?  It's the not the first year we've experienced having to put the normal activities of Christmas aside, but still, Christmas can sometimes be hard to get through.

Today marks eight years since we buried my mom.  The third with dialysis a part of our home. It's also another soltice, the return of the light.

I celebrate this light in the loving hearts I've come to know.  I celebrate it as snow falls outside my window before the sun comes up.   It rings in the laughter of my grandson, and in the warmth of my daughter's voice.  Light fills the room where I sit and brings memories of every person that has stepped up to share their caring heart.  It expands, bringing joy where sorrow once existed.   And joy, that my partner is here to sit with me while snow brings peace to this city.

I have been blessed to discover that Christmas isn't about the presents we buy or the fancy meals some eat.  It isn't about standing in line ups at stores or handing over a gift we feel obliged to give.  It's about love and loving in the best ways we can.

[paris]

Dear TW, I need to spend a long day with you.  I told someone else today that I feel like I am drowning and no one is throwing a rope.  I need calm words,kind deeds and no stress.  I am the patient but I am also the caregiver.  I do everything.  Appts, bills, house, cooking and all that goes with a house and husband.  I just want someone to take over, plan when family is getting together, plan the meal - just recognize that I am not the same person I was.   No one hears me at night when I can't sleep or gets up when I am throwing up for hours and  can't move because everything hurts so much.  My husband means well.   But I have always done everything and he doesn't quite know how to jump in and help.  Even with a to do list.  I understand his world has turned upside down also.  I get tired of doing doctors visits alone.  I am tired.   Your words always help.  I sit and read and then re-read them.   Thank you for being the calm spot in the middle of the storm.  Thank you for helping us all appreciate little things.  Please keep writing.  We all need you.  And keep jingling those bells!  The thought makes me smile!    I really didn't mean to "share" so much--I am struggling today.    Again, thank you.  May you and LL have a quiet peace filled holiday.  You are loved by many    

[breezysummerday]

Joie,

I want to sent you a couple of bells.
Please pm me your address.

[The Wife]

Paris - I'm going to sit beside you, give you a big hug, and listen.  And when we're done talking, I'm going to find a way to get you help.  OH, I wish this were possible.  You know, I do everything in this house too.  And I'm not a dialysis patient.  I have arthritis in my back around my spinal fusion and when I do too much, it causes my sciatica to act up.  Sometimes, I just want to give up, but I have energy to push through, and do.  Sometimes, I just want to let everything slide and if the dishes don't get done, so what.

Sometimes we think we've shared too much.  Why is that?  Why are we so afraid to tell others how we really feel?  Do we think we have to put on a tough act in order for others to feel good, or are we afraid that someone will think we're complaining? 

As women, we do a lot.  We think about what needs to be done without lists or someone asking us to do what needs to be done.  We step to the plate and make sure that our families have Christmas, even when we don't know how we're going to manage to pull it off.   Sometimes, we wish others would do the same.

The loss of my wallet was a gift.  It was a reminder that the greatest gift we can give each other is the gift of being present.  We can also be present with ourselves.  Yesterday I cooked all day long.  While I was cooking, I thought of my mom.  Since it was the anniversary of her burial, she was on my mind anyway.  With this recognition, I realized that the best way to spend my day, was to spend it in the kitchen with her.  I know she wasn't really here, but she was present.  In my heart.  And in my memories where she cooked, and laughed, and created in the kitchen with joy.  When I was done, I lit a couple of candles and crawled into a nice bubblebath.  I became present with myself.

Some of us aren't going to spend Christmas in the ways we would like.  Some won't be able to get out of bed, while others, will not have enough to eat.  Some will have plenty to eat but will be alone, while others will have a tree with many presents underneath, many family members by their sides, and quarrels about how they didn't get enough for Christmas. 

However you're spending the holiday season, remember, it's not about how much you do or what you get.  It's about love.

I send my love to all of you.


PS.  Can you tell me how to pm you breezysummerday?  I can't figure it out.  Maybe later, after I've finished my coffee.  One just never knows. 

[st789]

Stay in the moment.......inhale and exhale.

ALIVE... 

[The Wife]

You've got it st789! 

And in this moment, I'm feeling like writing more.

I used to do Christmas like my mother taught me.  I'd bake all sorts of things, make a huge dinner, and always have something to give and send each family member.  Usually, something I made.  My creations would take months to make but at the end, a smile was on my face. 

This year, LL wanted turkey.  Immediately, I thought of the cost and all of the work.  The making of stuffing, the picking of the bones, the boiling and making soup afterward, the clean up, and the exhaustion I always feel at the end of it all.

This year, I told LL I wasn't going to make turkey but then I thought, "What if this is our last Christmas together?"  Hopefully it's not, but one never knows.   Still, I didn't want to do all the work.  On Christmas day, I just want to rest, not have to cook, and enjoy the White Christmas we are going to have this year.

I decided to compromise and bought the turkey, telling myself the cost would be worth it, and he needs the protein.  Not only did I lose my wallet when I returned from the store, I didn't buy the bread cubes for the stuffing.  At nearly five dollars a bag, and a desire to do less, I honoured myself, along with what my hubby wanted.

I cooked the turkey on Saturday.  Yesterday, I made stew and baked one simple dessert and when his daughter came over, we celebrated Christmas, on a different day.   When Christmas day does arrive, I will be doing what I need.  LL will have what he wants.  And quiet will fill our home.

We all grow up with traditions.  Traditions we feel we need to keep.  Some of these things cause us stress and more work, and in the end, we can, if we allow ourselves, become resentful.  To me, resent is not a part of the season. 

I'm glad I did what I needed to do.  I'm glad I said, "Making dressing is extra work and I don't want any more work.  I'm tired!"   It ended up being nearly as much work as if I'd had done it all at the same time but by pacing myself, the stress of pulling it all together at the same moment, was gone.

On Christmas day, I'll be able to come here, or go to my email and spend it in a way that brings me peace when LL is sleeping or watching tv. 

Ah yes.  This moment.  This peace.  This forum that allows me to say what I feel like saying.  This moment where I connect with other hearts.

Blessings to all.

[The Wife]

Speaking of moments - I opened my curtains and noticed the sun shining on one of the trees covered with snow.  Immediately, I pulled out my point and shoot digital, and caught the moment in a photo.  As soon as I was done, the sun left.  The moment, however, is still with me.  If anyone can tell me how to post photos here, I would love to learn, and share my moment with you.

[The Wife]

I should be jumping in the shower and getting on with my day but I wanted to come back and spend a bit more time with Paris.

Paris, have you told your husband and family members how tired you are, and how you just aren't the same person anymore?  Have you, or can you ask someone else to take over or at least help with the Christmas preparations?

I've told LL several times that he needs to tell me how he feels and not to worry about it sounding like a complaint.  If I know his neropathy is acting up and his feet are in horrible pain, I will walk to the kitchen and get him the glass of water.  Instead of muttering frustration when bending over and putting his dialysis bags in the garbage, tell me it hurts.  Let me help. 

I imagine a lot of us are guilty of not sharing what we are experiencing, be it pain, exhaustion, or any of the emotions us human beings feel.  When LL does something that causes him too much pain, I want to know.  Seeing him struggle adds more stress.  I know he doesn't want to complain but when he shares what is in his heart, and tells me exactly how he feels physically, I don't feel so helpless.  Knowing that getting that glass of water for him when it's so painful to walk, or sitting and listening to how he's so tired of dialysis brings me comfort because I have comforted him. 

And Paris, it's okay to not do so much, to let things slide a bit.  Believe me!  I'm one who always likes to have everything clean and organized, and sometimes, I feel resentful because I don't have a caregiver to help with the things that cause me pain.  When there is no one else to do what needs to be done, I do it, or I do less.  Or I do it on a different day. 

After I cooked yesterday, I soaked in the tub.  Instead of getting dressed again, I wore my jammies for our Christmas dinner with LL's daughter.  She didn't mind at all, and when I told her I was too tired to make a Christmas dinner and get it all together in one moment, and that we were having stew so that I could pace myself with the work, she didn't mind that either.  Instead, she said, "This stew is sooooooo good.  Thank you!" 

[paris]

Well, I am here to thank you again, TW.  I rearranged my schedule and priorities.   The four quilts will not be finished; but the parts will be wrapped and given with love.  My Mother pieced the tops while in the nursing home before she died. I know my children will appreciate them but they will have to understand why I didn't get them finished.  The nine teddy bears I made for the grandkids are finished and wrapped.   Today, my 7 yr old and 5 year old grandson and granddaughter spent the day with me.  I took your lead and pulled out my Mother's old "fudge pot".  It is the bottom half of an old double boiler that my Mom always made her fudge in, and nothing else.   Zeke was fascinated with the whole process.  He loved watching the sugar and milk boil and said it looked like a chocolate river when I poured it out.  It really helped to center me and appreciate the moment.   Mom made fudge at the oddest times.  I remember her making a batch when we were watching TV during John Kennedy's funeral.  She always made it when The Wizard of Oz was on.  So, today the fourth generation scrapped the pot of all the yummy chocolate left behind.  He called his Mommy and told her he was having fudge for lunch.  (She didn't care, she also has memories of the fudge pot)    I decided Christmas dinner will be a buffet and not a formal sit down dinner.  My daughters are helping. They swept and dusted for me today.  I feel better about life in general today.  And it is because of your thoughts.  Making fudge and cookies was the best way I could spend my day.  Christmas cards will now say "Happy New Year" and I can do them at my leasure after Christmas Day.     I have always said that I never ask anyone to work harder than I do, but now may be the time to change my motto.   Oh, and I forgot to tell you that I spent the day in my pajamas!!  The grandkids loved it!  You never know how powerful your words can be, but yours helped me come to a turning point during this holiday season.     

[The Wife]

Your words touched my heart so deeply, tears of love and gratitude sprung forth.  I'm so glad to hear that you've adjusted your plans and when I read how much you've done, I was stunned.  What you have taken the time to create, whether something is finished or not, will be treasured more than you realize. 
What a special gift grandchildren are.  When they are older and have their own children, they will tell the story of the Christmas they tasted the sweetness of your heart. 

Have a beautiful Christmas Paris and thank YOU.   

May the season bring you peace, joy, and lots and lots of love.

[G-Ma]

TW..I feel like you helped a lot of us today in what you said.
Have a great week.
Ann

[The Wife]

Thank you G-ma. 

I sit in my old computer chair with the stuffing popping out of the sides this Christmas Eve morning.  It's a cozy chair, and as I take another sip of my coffee, I sit back and listen to the sound of rain. 

It was supposed to snow again and it still might, but right now, a familiar sound returns.  I think of my family who live in a different province, think of how they're all getting ready for their busy day, and of how there will be laughter, singing, and gathering around the tree.  And then I think of those who can't get out this Christmas, or partake in many of the festivities of the season. 

What I have learned by being the partner of a person living on dialysis brings me a gift that is greater than what I would find if I were to open a gift wrapped box.  These gifts come in the form of finding patience, acceptance, appreciation, flexibility, and honour for those who have taught me what it really means to love.

I think of my partner who misses out on so much, and I wonder what I could give him that doesn't come in a box this Christmas.    This journey isn't always an easy one.  Sometimes, sadness overtakes me, and sometimes, I wonder how long we can live this way.  But I sit here, in the silence of the morning, feeling grateful that he is with me to see another season.  I sit with gratitude for the food we have to eat, the shelter that keeps us warm and safe, the machine that keeps my partner alive. 

Snow covers the ground, slush makes the roads and sidewalks almost unbearable, and rain pounds down, dissolving bits of the past week's storms. 

All of us have experienced the storms of doctor's visits, hospital stays, cancellation of plans, and nights of worry.  So many of us have had to let go of what was, and find ways to feel joy when joy is the furthest thing from our minds.

The greatest joy I find comes when I give someone a gift.  I've learned that a gift doesn't always have to come in a box wrapped in pretty red paper or decorated with a shiny bow.  A gift could come in the act of sitting beside someone who is having a hard day physically, asking how they really are, or being quiet when quiet is necessary.  It can be something as simple as a heartfelt hug, a few tender words, or the sharing of a meal made with love.  It could be a joke, a playful moment, a night of watching movies, a kiss to say good-night.  A kiss to say, "I'm glad you're here."

So many of you have touched my heart, have taught me what I needed to learn about dialysis and what it's really like.  Some of you have given me the courage to go on when I felt all courage had left my heart.  Even though I wish our meeting would have been made in a different way, I'm glad that you are here.

I wish all of you a beautiful Christmas.
You are loved.

[G-Ma]

This was the most beautiful gift I received this Christmas...what you wrote. I think your partner would be thrilled and feel blessed to receive this also.  You are so good with words.
Have a wonderful holiday.
Ann

[The Wife]

It's Christmas morning and I'm sitting here with soft red aromatherapy socks on my feet.  My face, on the other hand, is hard, from the seaweed mask.  I love it.  I love how it's Christmas and I'm wearing red and green.  My partner still sleeps while I pamper myself.  After I shower, I'll put something nice on, prepare breakfast,  make a pot of coffee and raise my cup in celebration of another Christmas together.

After the dishes are washed, I'll get ready to go to my daughters.  We'll have a quiet lunch together and after I play with my grandson, I will put him to sleep for his afternoon nap.  But first, I will read him a story or two about Curious George.

Ahhh...Christmas...a peaceful day... a heart filled with peace.

 

[paris]

You words were the best gift I have gotten for a long time.  I shared some of your thoughts with my daughters because they could tell I was dealing with stress better the past few days.  So, I read them the words that gave me strength to simplify and breath during the holidays.   How fortunate we are to have you in our lives and to read your beautiful words.  I have kept you close to me the past few days.   

[The Wife]

Thank you Paris.   

[The Wife]

“How was your Christmas with your family?’  I asked as I poured the tea.

“I gave everyone a present and no one gave me a present back.  Not even my mom.” 

“Oh.”  I paused.   

“I know you’re not supposed to give to get something back but she could have at least given me a pair of socks. It didn’t even feel like Christmas,” she sighed.  “There wasn’t any magic.”


Magic.  A tree covered in decorations and lights.  Presents wrapped under the tree.  Opening a gift you wanted.  Expectation.  Anticipation.  Show me how much you love me.

Our society has made Christmas into one of consumerism.  We see it during commercials on TV, ads in newspapers, or sale signs on the windows of stores.  We see it when others carry their shopping bags, hear about it through discussions of vacation plans, and are reminded of it every time we see a Santa Suit.  For some, Christmas is about the birth of Christ.  For others, it’s about the presents, the food, the gathering of family and friends.   Whatever way Christmas is celebrated, there are expectations of how this day should be. 

It’s taken me a few years to realize that the spirit of the season doesn’t have to depend on a tree or presents wrapped in fancy paper.  This doesn’t mean that I don’t like giving or receiving gifts.  In fact, letting go of my expectations has led me to a deeper appreciation and understanding of what a gift truly is.

My grandson is a gift in my life.   And on Christmas day I wanted to give him a gift.  As I was reading a story from the book I gave him, he turned toward me, threw his arms around my neck, and gave me a kiss on the cheek.  Another book and a few pages later, he did the same thing.  At the age of two, it didn’t matter to him whether I was reading a book I gave him, or a book from the library.  What mattered was the moment we shared.   It was that moment, combined with previous moments that opened my heart to the real magic of Christmas.

The magic of Christmas spins through words in a book.  It weaves its way into the softness of a pair of socks, and dances in the flames of candles that add to the atmosphere of a nurturing bath.  It glides in the warmth of a cup of tea, in the aroma of a shared meal, and captures in heartfelt hugs.  It finds its way through heart to heart conversations, laughter, and tears.

The real magic of Christmas can be found wherever there is love. 

[okarol]

Well said TW! 

[kitkatz]

Amen to that! 

[The Wife]

My partner needs to have his chest busted and his arotic valve replaced.  When he went to the pacemaker clinic yesterday, he was told this surgery won't take place until it's a life and death situation.  When he starts getting dizzy or passing out, I'm to call the ambulance.  And then they'll try to save his life.

This is our healthcare in Canada.  We don't have the same problems as in the States but we do have a long wait list.  To me, waiting to have this done is like not doing anything when you have weak breaks in your car.  You take it to the mechanic and he tells you your brakes are failing.  Instead of repairing them before they completely fail, the mechanic tells you to wait until they're no longer doing their job.  While going downhill, see if you can get to the shop.  They'll repair it then.

So basically, we know that we're going to have another life and death situation.  Another, let's see if we can beat the clock event.  It could be in a year or three years.  No one really knows.   I wonder if they know the answer to this question:  If he wasn't a dialysis patient, would they get him in quicker?    What about if he was a politician?  Would there be space in the operating room then?  I could ask all kinds of questions but will it make a difference in how or when things are done?

Knowing all of this reminds me of the importance of being where we are, now.  Anything can happen.  It can be something good, something bad, or something we can't even imagine.  I've already learned that the best way to keep peace in my heart is to accept how things are, and to be in this day instead of fearing the future.

We've been through so much.  We're going to go through even more.  I take a sip of my coffee and listen to the ambulance that speeds by.  The siren softens as a breeze blows through my open window.  Our cat curls up on my bed.  My partner sleeps peacefully.

The sun will rise soon and when my partner gets up, I'll heat up the kettle again.  As he unhooks from the machine and takes his blood pressure and weight, I'll measure the coffee, open the curtains, and listen for the robin that sings on the tree outside our window.

[paul.karen]

Wow this is a sad read.  Hope all goes WELL  when the time comes.

And yes if he was a politician or someone of importance( to others then his family) he would be on the table now im sure.

Not sure what you meant but not having the same problems as the states does?

Needless best of luck to you both.

P&K

[The Wife]

Thanks Paul.Karen.

I understand there are insurance companies in the States and that there are costs to the patient.   If someone needs something and our medical system recogniizes it, you don't need approval from an insurance company.  The doctor's word is good enough.  Even so, there is the wait, like I mentioned above. 

[pelagia]

You have had more than your fair share of life's challenges and yet you continue to handle them with grace.  Here's hoping 2009 brings better health for LL and more of the simple joys of living your way.