August 6, 2012 at 1:45 am (anniversaries, death, how does it feel to die, joy) (, )

17 yrs ago we headed to Lake Tahoe and got married.  a month later we had the wedding that had been planned for several months.  this was not the first marriage for either of us and yet it was the first marriage in my heart. from the moment i layed eyes on him 20 yrs ago life has been truly a joy.  not that we have a life without strife.  for some reason this is difficult for me to write about.  how to put in to words, without sounding like a braggart, the difference in life now vs. the b.c. (before chris).

b.c. life :  there had been a marriage previously entered in to with hesitation and doubt.  it ended abruptly with his death.  there had been little happy moments yet nothing memorable.  most days were white knuckled hoping he didn’t get drunk and gotten behind the wheel.  he was a troubled man with a troubled past.  i was a nurse and he was a patient.  after nearly dying of alcohol poisoning he turned his attention to the nurse who runs the stairs everyday.  when well enough he is off to rehab and sends loving letters.  they would be  the only loving words for the next 10 yrs.  that was then and i have let go of those times.

tomorrow we are off to savannah.  the trip will be exhausting, we both know that.  one more reason to love and treasure this man, the ease in which he accepts these changes that affect his life.  mornings in the past were early rising and chatter.  now it is late rising for me and so he  is on his own most mornings.  past trips were spent wandering the streets, antiquing, walking much of the time.  when first planning this trip the conversation addressed the possibility he would go on his own to do some of the activities he enjoys and are no longer an option for me.  just remembering the conversation brings a mist to my eyes.  my love dismisses being on his own and suggests carriage rides, the wildlife refuge, and a visit to a tea room.

will this be the last wedding anniversary?  it is likely to be a last.  since entering year 5 the thought is never far from my mind.  to think that statistically people with this diagnosis do not live to the end of year 5. that is an anniversary and a reminder of what is coming.  as we plan our getaway, our 17 years of love is the only anniversary that matters.

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keep making that to-do list

December 16, 2011 at 1:44 am (coping, gratitude, joy) (, , , )

4 a.m. is a great time to work on the to-do list.  by this time any hold out for sleep has passed, time to organize the cd’s or all those pesky plastic storage containers that disappear with the socks in the wash.  if that is too much then it is on to the list.  the mind boggles at the idea of some who seldom make such a list.  it has been my habit for many years and has served me well in general.  at the beginning of this journey one way to cope and put things in to perspective was to revert to the list.  to my joy this has turned in to a multiple list job.  vikto frankyl recommends we find the joy/purpose in our life and we will be able to face even the most devastating circumstances.  if it was good enough for this holocaust survivor it seemed good enough for me.  as the list has diminished some concern/thoughts turned to a quote stating that is when you know you are done with life. if there is nothing else you want to do (and I am hoping they mean the small things like waking up) then there is a void and death sneaks in to fill it. 

it may be purposeful indeed how some items on my list are still outstanding.  now after a conversation with my man it occurs to me how I can do something that will bring him joy in years to come.  he often says he is not of this era and feels he has been left behind by technology. it would seem geekdom in our family belongs to me.  as de-cluttering continues at a snail’s pace, it is apparent the old vhs tapes are not going to be donated and will not be enjoyed in the future unless they are converted to dvd’s.  this it seems has made me almost giddy, do you know how long it is going to take to complete this task?  I am not the kind of person who walks away from a job not finished and it is such a gift to add this to my dwindling list.

after christmas, sharing information regarding what a caregiver can expect from a terminal loved one is on the list.  fascinating that a m.d. would think himself qualified to write this. it is almost laughable, it begins pretty strong and quickly goes downhill.  this is not a person who has suffered personal loss.  projecting some months to the new project and then there are always holidays, birthdays and …. well the list does go on.  one more thing to be grateful for, think I will put it on my list:)

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I ask myself

June 14, 2011 at 2:02 pm (choice, coping, family, feelings and thoughts, joy, motivation, why blog) ()

sometimes I ask myself  why I am doing this. understanding motivation for behavior is what I did professionally for years. one great thing about working with forensic psychology is learning to accept we do not understand what motivates behavior in every circumstance, that doesn’t stop us from trying though. we want it all in a neat package so we can say I would never do … because I am not that kind of person. well I am here to tell you I never thought I would be sharing my most private thoughts with, whoever reads this. It started harmless enough, thinking of it as a legacy for my loved ones after I am gone so they would know how much i treasured them. however, if what i say over and over in this blog is true don’t they know that? I guess my concern is they may look back and wonder what motivated me to make the choices I have. there will be no chance for questions or for them to understand my choices have been my own and no one else has influenced them.

some decisions   have been to donate my body to science, make a living will that prevents artificial life-sustaining devices, to ask for a memorial with music and laughter, along with some others. most of these decisions I believe anyone who knows me can understand. it has helped me to write what I feel as sort of an ongoing dialog with myself regarding these choices. this weekend bill, Kristen and my grandson McGill and grand-daughter Susanna came to visit, it was really for an early father’s day for Chris. heather came up from Atlanta for the afternoon. it was the worst time for me to get sick and so of course I did. a couple of weeks ago I went for a liver scan to rule out liver cancer and I did not get the results until today. thursday night I became ill and by friday was running high fever, lots of other stuff no one needs to read about here, so I made some choices there and then. I don’t regret them and take full responsibility for them. I decided to keep things as normal as possible when they arrived late friday hoping to shake the worst off by the next day. they were going to make early dinner for Chris, and heather brought a great gift for Chris. it was too important for me to not take that time away from any of them. since I have been in kidney failure before by saturday afternoon I was pretty sure this was either failure or something very close to it. my breathing has become almost so labor intensive I can think of nothing else. I start coughing and gasping uncontrollably so you can understand that I am not about to put my grandkids through this. I stayed in the bedroom most of the day, I came out once when everyone was cooking and playing. again later I came out to see the kids and even played with them a bit. several times Chris asked me about going to the ER. I know he would have taken me and stayed with me, I also know they would have admitted me (confirmed by my dr. today). strange as it may seem to some I did not want to do that. it was my choice to give the one thing I could, I could give them the time together without worrying about me. what I got in return, is what motivated me to do that. I was awake some times and could hear the kids playing, the laughter and could even smell the food they were cooking so lovingly. that was their gift to me.

my sister is coming from san francisco and will be here tomorrow. she does not know how ill I have been these past few weeks. luckily she has many friends in Atlanta and when she is not here curled up with a book, chatting with Chris or loving the cats, I will send her on her way to be with those friends. she will return with stories and make me laugh. she has that way about her. she can also just be here quietly with me which is another thing I treasure her for. I wish I were not this sick right now, I wish that we could have had more good days together. I am sure we will, soon, I hope.

so why do this? I do this for me and for them. I want them to know that I do not regret one moment of this weekend or any other time I choose to put them first. by doing so I also put myself first, the ER, being admitted to the hospital, not anything as wonderful as the sound of happy people even if it is in the next room.

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nothing new in the truth

June 8, 2011 at 11:28 am (choice, family, feelings and thoughts, friends, gratitude, hope, joy, living, love)

The following is from an email I received in one of those forwards so many of us delete without reading. Since this came from a reliable source (thank you Susanne) I read it. I have seen it before and it just validates for me the way I choose to look at life, and the changes that are happening. The first time I saw this I smiled and thought what a great attitude and I hope I can live this way when things are not going so well. It is easy when you are young and the world is just so bright and old age seems light years away. of course old age is not the only thing that can happen to turn your world upside down. find out you are not going to make it to old age and see if you start assessing life a little differently.

Happiness is something you decide on ahead of time. Whether I like my room or not doesn’t depend on how the furniture is arranged … it’s how I arrange my mind. I already decided to love it. ‘It’s a decision I make every morning when I wake up. I have a choice; I can spend the day in bed recounting the difficulty I have with the parts of my body that no longer work, or get out of bed and be thankful for the ones that do.
Each day is a gift, and as long as my eyes open, I’ll focus on the new day and all the happy memories I’ve stored away.. Just for this time in my life.
Old age is like a bank account. You withdraw from what you’ve put in. So, my advice to you would be to deposit a lot of happiness in the bank account of memories!

for me it is a checklist, literally: first did I wake up, okay that’s a good sign. eyes open, better. feet on floor, very good. husband, check. cats, check. take a shower without throwing up or coughing uncontrollably, doesn’t matter, I am up and on my feet. everything else is just by grace and I appreciate it. even tonight when pain is trying to crowd out every thought and feeling. yes even now I am grateful, I am feeling which means I am still here. my mind is as good as it has ever been, not sure what that says about me:) the absolute wonder of it all is the memories I have cannot be touched by even this pain. our Charleston family is visiting this weekend and I am going to rest up so we can make as many memories as possible. each time I am with them or even talk on the phone I am for that time not in pain. oh pain is there and trying to be heard, to push out the joy but I choose not to let it. who knows if that will work in the future. if it doesn’t I will find a way to adjust. I have already made up my mind. this disease will not decide how I love and will not tell me to stop making memories. it has been my privilege to be a part of many happy hours, days and weeks with those I love. as I sit here I can remember the first time my sister, who is 14 yrs younger than me, smiled at me and twisted my heart around her little finger. there are too many to write about here but I have been graced with much joy and love in life.

joy is an important part of our life and we can choose to have it. are you happy? make your list and be aware of what makes you smile inside and out. don’t let the days pass without that smile, it is your choice.

to clarify my last post I want to say it came across a bit whiny and that was not my intention. I worry about the people I love and know this is a bit of a rollercoaster. some days the news could be better and then it will be better. I worry about the toll it takes on others joy. recently a friend confided she felt she shouldn’t complain, she said compared to my problems hers were nothing. this is the kind of issue I want to avoid. my husband has said the same thing, and I understand what they are saying. however, to me it implies I am unable to have compassion for others and it is all about me. the truth is I want to be as supportive to them as they are to me. let’s not compare scar’s. another persons pain is as real as mine and I hope as long as I have a breath I will want to comfort others and be supportive of them. love doesn’t stop, not now and I hope not in my lifetime.

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keeping it real

May 24, 2011 at 12:09 pm (choice, family, friends, gratitude, joy, living, optimism)

while trying to stay optimistically realistic I have noticed how easy it is to slip over the line out of realistic.  the medication I stopped has not had time to make any real changes and yet I find myself watching and thinking how long since I felt this way or that way.

talking to my sister last night really helped. she was very supportive and reminded me that I know my body and am smart enough to make this choice. how lucky can one person be? I have so many people who support this decision and believe in me. I am a little annoyed with myself for not fighting for this sooner. when I spoke to my cardiologist in november 2010 and he said no, I wish I had been more pro-active. what matters is I am making that choice now. ask yourself if there are choices you could be making now for a better life? are you living your best life? if not, don’t be discouraged about the past, look forward and ask yourself what you really need to be happy. not what you need to be rich or famous or even in love, ask what you need to be happy. the answer may surprise you. as another psychologist said, it doesn’t take money to solve a money problem. this is one truth I wish people could hear and understand. money will not make you happy if you are not a happy person to begin with. no doubt we need enough to meet our basic needs, but when did basic needs become so vast and expensive? remember when people had one car? some people didn’t even have one! wow imagine that! we have become a nation of consumers and overly concerned with things rather than people.

my son-in-law told me one day that his kids ( my adorable grandchildren) did not seem to be affected by the downturn in the economy. this really caught me off-balance, my response was to say his children are not dependent on the things he can or cannot provide for them. his children are “recession proof” and I wish for more children their parents would provide this lesson. bill does things with his children. that simple. his children are fed and clothed and best of all loved. they spend time with their dad who could say as many do they are too busy working. Kristen and bill take their kids to events and tailgate with friends, camp out in the back yard and make smores. these are the important things that make them and their children “happy” people.

when I hear about the tornado’s and the victims it breaks my heart. one woman returned to her home and it was to the ground but at that moment someone found her cat and she was smiling. she was happy in that moment that she had her cat. that made her happy, those are the moments we need to remember. I can remember the day I had a heart attack, went in to multi-system failure or I can remember that Chris was by my side, that my family cared and friends came to see me. I got to go home and that was a truly happy moment. today I was thinking and remembered that it was 19 yrs ago on my birthday that I first laid eyes on Chris. still brings a smile to my face. I can choose to see the house razed to the ground or that my cat is safe.

some pessimists think optimists are silly and I can understand that. as an optimist I think pessimists are sad people who have been disappointed with life. I think we need a new label, let’s be optimistic realists! let’s be real that things are not always going to work out the way we want but never stop hoping that they will.

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what will the drs. say?

May 19, 2011 at 10:53 am (choice, doctors, family, feelings and thoughts, friends, gratitude, joy, living, love)

on average I give little thought to upcoming appts and what the drs. will say. this week I see my primary care dr. and next week my cardiologist. as I head in to these appts I do have some things on my mind. I have some decisions to make and want to make sure I ask all the right questions. being an informed patient is so important. it always surprises me how many people go to the dr. and come out not knowing any more than when they went in. admittedly some drs. do not encourage questions, they like to just give out what information they want to give and move on to the next patient. the facts for them are they have 15 minutes scheduled per patient and any more than that means they are working late, and the next patient is either waiting or someone’s time is being cut to make up for the overage. as someone who had 50 minute sessions I learned early on the chances of ending exactly on time were slim to non unless we were ending our sessions completely. under those circumstances people often did not show or just came in to say goodbye. for a short time someone else was helping me by making my appts and she booked me every hour on the hour! I was in the habit of giving myself at least a 1/2 hour in between and often just visited other staff to decompress. my california friend T was in an office close to mine and I could always count on her or her partner in crime DD for a laugh.

back to the appts at hand. for today I am not going to get into what I need to decide as I have not discussed it with my family and respect them too much to have them read about it here. this decision has been hanging over my head so to say for several months and I keep thinking I can’t do this now because of the holidays or birthdays or some other event. the truth is there will not be a good time to talk about this. however, I am trying to break it down into manageable pieces. first get as much information from the drs. find out what they are thinking and why. then I will decide when to sit down with my husband and we will decide about the rest of the family. at times we have not agreed on telling them news. I tend to be no news is not bad news and he wants to tell whatever is currently happening. my thoughts are this could be a long process (wishful thinking?) and I don’t like to put them through the little ups and downs which is just unnecessary stress. frankly I am still having problems with the whole “how are you today” question. most of the time it is followed by the ” you look good” comment. sometimes I think really? I look good? okay well I am having the worst day ever or have 0 energy but if you say I look good then…. but what are people going to say? wow you look good for someone with a heart that could stop any minute. that would be funny, I would like that actually:)

the great thing is I am going into this period with so much built up joy and love that I know, no matter what happens at this point, I have had such a good time I can’t complain! early on I said I would talk about my life, the early years, as I went on through this process. what I have discovered is it is all blah blah blah. let’s just say if you think of every horrible thing that could happen to a child, a young woman, a soldier, the wife of an alcoholic/drug addict, the daughter of an abusive mother you will know about half of what I went through in my pre-life. now I am married to a kind wonderful man who thinks I am his hero, I have a sister who I love and she loves me the way sister’s should, I have 2 step-daughters that are so much more, they are my friends as well. Grandchildren who love me and whom I adore, friends that feel like real friends and so much more. look around you, do you see how much you have or don’t have? I choose to see what I have and anything I don’t have is really of no consequence to me. My husband’s first wife Susanne sent me a birthday card, that my friends says so much.

if you live in america you are blessed by birth in a free nation, if you woke up this morning you have life, opened your eyes? put your feet on the floor? spoke? used indoor plumbing? ate what you wanted? made contact with another warm body? the list goes on and on. tonight and tomorrow as a start, think about each thing you do and imagine your life in another place or time without those blessings. choose to be grateful. I know there are days we want to say this sucks, and yes there are days it is a bit harder to find what you are grateful for but those are the days you need to be even more aware of each small blessing given to you. even the tears we shed are a gift, they are confirmation of our humanity, of loss which means we had or joy which means we have. I have a good life and someday people will say she “had” a good life.

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it’s all a blur

May 15, 2011 at 2:58 pm (choice, family, feelings and thoughts, friends, gratitude, joy, living, love)

much like our wedding day was, the celebration my dear husband planned, was wonderful and went by so quickly I would like an instant replay button! he promised a no fuss celebration, said he would take care of everything and he did. more than one guest commented on what a great job he did.

this is the thing, if you are living in the moment it doesn’t matter what may come tomorrow or a year from now. to anyone who is just waiting for the end that is what you will get, the end. I want all that stuff in-between! I want to live, love and laugh. that is what was on my cake. when we went to the bakery to pick out a cake I was very sure I did not want a “birthday” cake. so Chris thought about it and that is what was written on my amazing lemon cake. everyone was having a wonderful time and I did not think once about whether or not this is the last one. lately I have read some blogs written by people who are just not planning and giving themselves something to look forward to.

if you are reading this and you get nothing more than this, live your life now, that would be enough. it would make this worth the time I have spent to think that one person may say okay let me look at this another way. if you don’t have something or someone in your life to be grateful for then get off your behind and make it happen. you can still have love and you can laugh and you can live today.

although I was not crazy about the idea of a party, tonight I am grateful Chris wanted to do this. we asked for no gifts and for the most part people went along. however there were a couple who didn’t and I appreciated the thoughts. the cards were amazing. people obviously took the time to write something very personal and kind. I am a card person, give me a card anytime over a pricey gift.

let me just get to the BIGGEST surprise of all. my loving family from Charleston surprised me with a visit. when I came into the kitchen and saw them I was completely speechless. they drove from Charleston s.c. to north of Atlanta and have to go back in the morning. the gift of their time and the energy it took …. well let’s just say tears were shed. I share their 2 beautiful children with a number of other grandparents and yet I have never felt less than any of the others. my son-in-law is an incredible young man and I could not have been happier when Kristen married him. they have let me be a part of their lives and here they were on my birthday in our kitchen. heather came up again and I appreciate that more than she knows. someone asked me how many children I have and I wanted to dance with joy telling them how I have been blessed with becoming a member of this family. this is what I mean by living in the moment. yes I felt like dancing with joy and cried with the love and gratitude of where I am in my life.

there were also times I had to leave the room since the pain would become so overpowering I couldn’t breath. the great thing is I could take those moments and return without the awkward pitying glances or looks of concern. see that is their gift to me as well. we don’t need to talk about it. we know. they respect my choices and I am so grateful for that.

my youngest sister sent me flowers that arrived during the party and I knew she was thinking of me. next month she is coming all the way from San Francisco for a week. Kristen, bill and the grandkids are coming the weekend before that. something to look forward to, more time to love, laugh and just live. you may ask what if I continue to get worse? then I will and I won’t regret lost moments. I will have lived each moment and made memories to leave behind.

so if you are the one dying, call a friend, call a loved one and make a plan for the future. live your life now, don’t sit around waiting for what we all know is coming. the minute we are born we are dying just some of us sooner than expected. I wish for you to know the kind of joy where you say it’s all a blur and wish I could have an instant replay:)

one last thought and off to bed. remember that family is who we choose as family not just the family we are born into. I am grateful to the people who have chosen me to be a part of their family and to my sister who has made the choice to keep me as family:)

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the things we do for love

April 28, 2011 at 4:43 am (family, friends, gratitude, joy, love)

when working with teens I heard some pretty wild stories, some bordering on stalking, or just plain silly, all in the name of love. what I realized as I have gotten older and have worked with adults, both hospital pts. and friends, a lot of us are still doing some crazy things for love. one of the big ones that I have heard way too many times in the past few yrs are people moving for love. I don’t mean move down the street or across town but to another state or even country with no idea of how they were going to support themselves. Leaving family, friends, gainful employment and “your life” for another person in the name of love is risky at best and a complete nightmare at worst. does the person we are doing this for really appreciate the responsibility they are now taking on? anyway I was just thinking about some of the things I have done for love.

Except for my son I don’t believe I have ever loved anyone the way I love my husband Chris. of course it is a very different kind of love than you have for a child but the commonality is they are unconditional. not that you don’t get mad at them and think “what was I thinking” but that passes and your heart and head go back to how 99% of the time you adore them. I have tremendous love for my sister Angie and she even stayed with us for a year and I only remember 1 time being pretty angry with her. since she was born though she has known if she can make me smile then it is all over, I cannot stay mad at her.

when I was 14 my mother was pregnant with Angie and that is when I came to live at their house. I fell in love with that baby the moment she came home from the hospital and for the first 2 yrs of her life she went just about everywhere with me. even my friends got used to having her around since I would not leave her at home. I got married young and she and my son are about 3 1/2 yrs apart so they have been more like brother and sister. she knows I would do anything for her.

getting back to Chris, I was looking at my first post and how I had the heart attack the day we moved and I did not want to upset him. I was not going to have the defib implanted but did it for him and day-to-day I try to make our time as normal as possible. I encourage him to continue his activities outside of the house such as playing bridge and poker. I will push myself to spend whatever time I can with family and friends out of love for them and in return?

the things they do for me out of love is amazing and I hope to never take them for granted. every time they make time for me, go out of their way to accommodate my ever-changing list of can’t do anymore, I am touched by what they do for love! look around and appreciate the love that is shown to you in the everyday moments. there are certainly big gestures but it is the small gestures that mean so much. it is easy to do something once a year, we give gifts for this or that occasion, I have found that the gift of someones time or kindness has profound meaning for me. I try everyday to show my love for others and hope that it has made some small smile cross their face.

being ill can make you change in so many ways, but it cannot change the things we do for love!

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April 18, 2011 at 2:38 pm (choice, family, friends, humor, joy)

if asked what is the one thing can I do for someone who is terminally ill, my answer would have to be have a sense of humor! come on people do you really think we can get through this and not lose our mind without some humor?

Chris and I had dinner with a couple of very special friends and the adorable baby g. L is in law enforcement and had to respond to a very dangerous situation yesterday. there was an explosion at a battery recycling facility so of course the police, the fire department, and who knows what other agencies were involved. so she calls her friend who happens to be at work and is the mother of the adorable g to bring her water. then she realized just what a dangerous situation this was and called back to say don’t come. without thinking about it I said you should have called me, not like I have to worry about being exposed to something toxic:) this is where I expected a smile and got a very different kind of look. it could have been that she was bone tired and in my mind this was a little light humor. I miss that, I miss being able to say what is on my mind and the kind of thing people used to laugh with me about has now become somehow in bad taste.

I was in the military at a very young age, saw things that as our present day soldiers know, no one should have to see. working with clients that had abused others or been abused. patients that sat across from me and I knew the horrendous acts they had committed. even my life as a child was not the kind of life I would wish on another child. As so many others, I have come through all these things with a sense of humor and compassion for my fellow human beings. now I am privileged to know what many don’t. I know that I will not grow old and each day could be the last. I need to laugh and for the people around me that I care about to laugh with me.

In one of my other notes I mentioned wanting to do for others and some without knowing maybe have given me that gift. one friend has been sick and finally asked me to bring her some basic comforts. I think she didn’t ask before since she has mentioned feeling weak if she complains about something to me when I have such a serious issue to live with. Chris and I have talked about this on several occasions. he feels he shouldn’t complain when he knows his discomfort is temporary. that is hard for me since I do not see the relevance. do we not all suffer and is there (if we look around) always someone “worse” off than we are? my pain does not diminish yours. I still have the ability to feel for others and hope I will to the end. one friend said a few days after we had been together that she felt like we had spent the whole time talking about her and next time we wouldn’t do that. OUCH! it was her time to be cared for and as her friend I want to be able to offer that.

My heart will stop beating some day soon, that is a fact. My heart will love and care for others until that day. so please laugh with me and let me care for you. it is what makes me ….. me

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be okay today

April 15, 2011 at 3:32 am (choice, family, friends, joy, living) this is I hope the link to youtube video of K.D. Lang singing hallelujah. I have had some rough days lately but have decided I am over it. Yep that is what I have decided for today. Don’t know about tomorrow but who really knows about tomorrow anyway? Music has a way of just making my spirits rise. one of my favs that I listen to just about everyday is ingrid michaelson’s song I Just Want To Be Okay. some of the words are, I just want to be okay today. this never fails to put things in perspective for me. If we can just be okay today isn’t that a gift?

plants are blooming and everything is turning green and so beautiful. for me it is my time to view the world from the inside. this heart thing makes summer hard for me. the heat makes it even harder for my heart to keep on beating, but beat it does and so I am okay today. many of us need to make the commitment to be okay if only for today. there are so many who suffer from more than disease of the body, there is of course the mind, and the soul. so for today I wish you at least “okay” but really wish true joy of the heart and soul for that is the real healing of our spirit.

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