850 days

May 20, 2015 at 10:48 pm (Uncategorized)

s blake callahan:

for vic, her sons and mother…..

Originally posted on Vic's Final Journey:

It is a mere 850 days since Vic died.  2 years and 4 months seems so short… 850 days seems far more representative of the longing.  It seems “longer”….

I woke up this morning with tears pouring down my cheeks.  I so longed to hold my child.  I know that the boys remembered too.  Jon-Daniel posted on his Facebook “Appreciate your Mom, tell her you love her, make her smile – because the only time she ever smiled while you were crying was when you were born!”  The first to “like” his post was his brother.

I imagined that the longing would get better.  It doesn’t!

At first it felt as if I was overseas – away from the trauma of Vic being ill.  I always felt guilty at the “reprieves” I had when I was travelling for work.  Now I would give anything and everything for just an extra minute…

View original 390 more words

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on your mark, get ready and get the heck outta here!

May 14, 2015 at 2:52 am (Uncategorized) (, , , , , , , )

last week i spent a few days in the hospital.  here are a few clips from this visit-

emergency room (where i was sent from my cardiologist)

er doctor: after seeing your bloodwork and speaking to your dr we want to admit you to the hospital so we can run further tests and get you stabilized.

me: i understand. first i would need to know how long this would take along with what type of tests are going to be run.

er dr (with a hint of surprise): well we would do our best to have you out in a few days. it would all depend on the results of your results.

me: my concern is that i not be here beyond friday. i will agree to be admitted, however, i would point out that i am wearing my running shoes.

before i was even out of the er, waiting for a bed and transport upstairs, my first test was run. so i guess they are taking this running shoes thing seriously.

 

fast forward to friday. fairly early i spoke to my guy and told him there was no need to come until i called him to pick me up to come home.  just the day before i was able to see my cardiologist, he is the dr who had called and wanted me to be admitted. after a few tests were run he was ok with me being discharged, but wait, first the nephrologist needed to be the one to do the deed.

friday morning the jovial dr i came in to see me.  my numbers were better even though not normal.  he agreed that staying longer would not change my situation.  he stood beside my bed and said “your kidneys are thinning and scarred.”  i sort of waved that aside and said i knew that so why not just go home.  dr i is a very pleasant man and i look forward to working with him.  what happened next proves the guy can work with me.  after this brief exchange i said “so are you going to sign my discharge orders now or after lunch?” it was by now nearly noon.  he was moving toward the door and i knew i had to act fast. he turned to face me and said the hospitalist had to write the discharge order.  the hospitalist is the dr at the hospital who coordinates a patients care. as he is moving i say “no, no, no, dr patel told me it was up to you.” he smiled, threw up his hands in surrender then said “ok, so i’ll make the call.”

within 20 minutes the lovely hospitalist arrived and the deal was sealed.  i made the call home and waited a bit less patiently than i would like looking back on the day.  it took longer to have the iv removed and the nurse to go over my discharge instructions.  we were offered lunch but declined. i’m sure anyone can understand why we would prefer food that actually has taste versus the unrecognizable stuff fed to the ill.

the moral of the story? set your boundaries and don’t be intimidated when you are sitting on a bed with a gown that is open in the back.  we all want to think that the dr.’s have our best interest at heart, we trust the hospital and their staff.  i am not saying don’t trust, however, don’t blindly trust while ignoring your own instincts.

tomorrow i have an appt to see my new nephrologist.  he is a jovial man, i think we are going to get along splendidly.

 

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just look for that upside

May 7, 2015 at 11:23 pm (Uncategorized) (, , , , , , , , )

so let me start by saying this will be short as i am in the hospital and i fear typing with an iffy iv line.

a few weeks ago i decided to look for a new cardiologist. no complaints about my previous cardio guy but the hospital he had privileges at is a distance from our small town in addition to being in a highly congested area. my poor love had gotten lost the last time i was admitted, it is a massive configuration of concrete and glass. if you didn’t have heart failure when you got there you certainly would by the time you found where you were going.

yesterday i saw the new local cardiologist and i immediately knew he was the “guy.” he ordered blood work and a couple of other tests. everything was in one smaller more manageable space. lab work completed we headed for a bite and back to the “love nest.” at 5 p.m. the phone rings and it is the new cardio. he gets right to the point, i need to be admitted to the hospital. “you have two choices, go to rome or the local hospital.” it took me a moment to grasp that he was not saying my choices were hospital or handle it outpatient. he gave me the numbers and i knew my only choice was to be admitted as he was advising.

now you might think, how sad. certainly going to the hospital is not an event to celebrate. or is it?

every person i have come in to contact with has given me the gift of their kindness and genuine care. i am so grateful tonight for the friends who are going to read this and care. you have no reason to but you do. wow! how lucky am i?

my family is loving and have been with me through this journey. they support me in the way i need supporting. my friend flower (her hippy name) came by after working her shift and brought me my favorite food, grilled cheese with tomato on it:) she also brought soup and blackberry cobbler!! knowing how dearly he loves the cobbler i saved it for him.

there was a choice today, as there is every day for each one of us. my veins were not cooperating and at a certain point i stopped counting how many people had stuck me how many times to get this iv going. the goal was get that baby started and each attempt was just leading to the moment that needle went in and the fluid started running.

to all the staff at Cartersville Medical Center i want to let you know your kindness made a difference and was valued deeply. to the drs at Harbin Clinic in Cartersville, Georgia i can’t stop smiling. i know i have found a team that i can turn these problems over to and trust that you will care. Dr. Patel (cardiologist) took the time, even though his day was officially over, to look at those lab results, taking the time to call me and give me the support and confidence i needed to actually allow myself to receive this care. Dr. Ishaque is my kidney guy now and again i felt an instant rapport.

how lucky am i that the timing allowed me to experience all these beautiful, hardworking, caring health care givers.

of course i have my running shoes just in case we don’t agree on my being discharged tomorrow:) did you really think i was going to let them keep me?? i am shaking my head and saying to you, ” you don’t know me at all, but you will if you want to.”

so this is longer than i intended and i want to thank you again for the love and support. to angie, heather, kristen and rita……. you know how i feel about you. to my friends i just rejoice in the gift of your wondrous spirit and your acceptance of me for who i am.

IT’S STILL BEATING!!!! and that’s an amazing, miraculous, and wondrous thing.

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be kind to yourself

May 3, 2015 at 6:13 am (Uncategorized) (, , , , , , , , )

As I’ve aged, I’ve become kinder to myself, and less critical of myself. I’ve become my own friend.

I have seen too many dear friends leave this world, too soon; before they understood the great freedom that comes with aging.

Whose business is it, if I choose to read, or play, on the computer, until 4 AM, or sleep until noon? I will dance with myself to those wonderful tunes of the 60 &70’s, and if I, at the same time, wish to weep over a lost love, I will.

I will walk the beach, in a swim suit that is stretched over a bulging body, and will dive into the waves, with abandon, if I choose to, despite the pitying glances from the jet set..
They, too, will get old.

I know I am sometimes forgetful. But there again, some of life is just as well forgotten. And, I eventually remember the important things.

Sure, over the years, my heart has been broken. How can your heart not break, when you lose a loved one, or when a child suffers, or even when somebody’s beloved pet gets hit by a car? But, broken hearts are what give us strength, and understanding, and compassion. A heart never broken, is pristine, and sterile, and will never know the joy of being imperfect.



I am so blessed to have lived long enough to have my hair turning gray, and to have my youthful laughs be forever etched into deep grooves on my face. So many have never laughed, and so many have died before their hair could turn silver.

As you get older, it is easier to be positive. You care less about what other people think.

I don’t question myself anymore. I’ve even earned the right to be wrong.
So, to answer your question, I like being old. It has set me free. I like the person I have become. I am not going to live forever, but while I am still here, I will not waste time lamenting what could have been, or worrying about what will be. And I shall eat dessert every single day (if I feel like it).

i have no idea where this came from and i hope i will be forgiven for repeating what may belong to someone else.

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the best days of my life are ahead of me

April 30, 2015 at 2:26 am (Uncategorized) (, , , , , , , )

at least i have to believe that. to say that the best days are behind me would just be like speaking an alien language. even if it is just to say that tomorrow is going to be better i hate to think of the people who are giving up and saying things are never going to be better.

at some point i realized that in reality things are not going to get better in the traditional sense of the word. i guess i think the love i am gifted from my family is growing and yes getting better as time goes passes. my amazing sister is moving across country to live with us and help not only me but this wonderful man of mine! how many siblings would do this? she is leaving san francisco, all her friends and the absolutely fabulous city activities, and one of the best jobs a person could have. my loving man who replied to comment, “we can admit me to a nursing home,” that he couldn’t “bear” to even think of such a thing.

there are days that i sleep till evening hours, i drag myself out of bed and make it to the living room. at this point he offers to go get us take out or to make me some soup or a grilled cheese. on these same days and others i can have what can only be called legs of jelly, they shake and feel as though i am going to sink to the floor. i feel so weak and in pain it is hard to imagine i will live more than another few hours. during these times i sit beside my love and we turn on shows that we both love to watch. sometimes i make it and other times i just fall back asleep. he loves for me to be in bed beside him and of course that is where i want to be. he will at times let me sleep and just come back at other times during the night and early morning hours.

we manage to get to the grocery store once a week or so. sometimes i have to use the electric cart. i hate to use the cart. it feels like defeat, however, it affords me the opportunity to accompany him. this guarantees we will not have 10 gallon jars of mayonnaise. he loves the huge quantities of food stuff that can be bought without having room for these items.

i try to meet the bridge group for dinner once a week but that hasn’t worked out for the past couple of weeks. i am determined to make it this week, see better days ahead:)

we have a lot going on and i definitely want to process it here and get feedback from you my family and friends.

just remember no matter how bleak things may look, your best days are ahead of you. i promise you!

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healing laughter

April 20, 2015 at 2:02 am (Uncategorized) (, , , , , , , )

by now most people are aware of the healing power of laughter. ironically i read one of the best books that gave personal testimony to that power. someone who was facing an uncertain future than to cancer decided to experiment with this theory. he watched old comedies (i’m talking really old here!) and found that he along some other subjects of his research benefited greatly from letting themselves just laugh every day. of course they knew they faced a battle of life and death with the hope that they would be one of the lucky ones.

I guess i am thinking of this tonight ( just turning into tomorrow actually) thanks first to my beloved, my amazing sister, family, and friends. it has been weeks now of not being able to function as i once did. what was my norm a few months ago is a thing of the past. we are adjusting to the new norm. i will not sugar coat this, it is one of the hardest times of my life in some ways. my poor love has been at a loss of what he can do to make things better.

starting with yesterday i managed to force myself to leave the land of sleep and dreams to make myself the companion he deserves. though i can never truly fill that role anymore. after days of sleeping up to 15 hours or more i would have crawled if need be to the shower. shaking of the fog that lay over me like morning dew i was able to ready myself for the day. even though it was officially after noon. my arms were resistant to the task of washing my hair, however, i was even more resistant to the nagging voice of my body telling me to go back to bed. it whispers “you aren’t up to this,” “what you need to lay back down.” my mind, now starting rise above the fog reminds me of the vow i made just before drifting off, tomorrow you will rise, you will get out of your pajamas, you will complete your “toilette” and join your loving man at least 4 hours earlier than today.

all that army training helped me put mind over body and i did reach my goal. all day long i was rewarded with his joy, his laughter and conversations that need to happen. he has been stressed and overwhelmed with several issues we are facing. one of our rentals is going to be vacant at the end of may, first week of june. my sister arrives on the 10th of june and we have discussed moving back to our larger home in a city 30 minutes from here. the house we are living in has some structural issues and a letter along with a check from one our rental homes marked non-sufficient funds. oh and that whole your wife, your life partner and the one who knows how to use the computer is terminally ill.

being married to trained psychologist is not all bad:) think of all the money saved. i know how to help him. a sure tried and true technique is to sit with him, listen to his worries (sooth him and convince him it is good to tail about these worries), re-assure him it is not whining when you have reason to be feeling stressed out. i tell him how important he is to me and his sleeplessness is a sign we must talk and resolve what we can and let go of the things we have no control over. we make a mental list of the events that have colored his little cloud dark. after an hour or two he is feeling more empowered and his face is relaxed and smiling once again. i love that face. he has the most adorable ears though he would not agree with me there:)

after some phone calls and a drive to over to canton he is seeing more possibilities rather than walls. now he is being what some might think a bit silly but it is the return of his real self. that self that is funny and quirky. in an old funny movie we had watched together not long ago one character asks the other a question. the person responding touched his nose and said “yes,” then touched his chin and said ” but then again no.” lately when i ask a question he touches his nose, pauses, then touches his chin. we have gotten a lot of laughs out of that one.

a few hours later he is tired and heads for bed. my body is rebelling against the long hours of activity. my breathing is labored, i have the end stage cough thanks to all the built up fluid. i haven’t spoken to my sister in over a week. we text and Facebook but it isn’t the same as the joy i get from our conversations. i text, “can you talk?” she responds YES! call me as soon as you feel like it. earphone plugged in i tell suri to call angie. she picks up and i immediately feel better. after a great “sister” talk i tell her she must go to bed and get some rest. she has an early day tomorrow.

as it turned out i had a bit of an early day myself. thinking i would make the push at 2 p.m. i become aware that he is next to me. though my back is to him i can feel that he is awake and looking at me. with the feeling of being encased in cement i manage to roll over and meet his gaze. i am holding up 2 fingers. he says he just wanted to lie here with me, he knows i have set a time to make the push.

oh you beautiful, loving man. i will move (as they say) heaven and earth to give us another “early” day. knowing the cuddle will only hold me fast to the bed i withdraw and force one leg and then the other off the side of the bed. i am rewarded with one of those days you find yourself saying, life is good! life is just so sweet and each moment is a reminder of the love that keeps me here.

we do a little grocery shopping together, my lovely friend rita who tells me if i can’t come out she will crawl in bed with me and tell me stories, a short time later we are having dinner with out “tin” lizzie. she wears a badge. she wears it well. she asks if she has handled a domestic violence call the best way (she has). she glows when she talks about her new and adult love relationship, i believe this is the “one.” Lara is grounded, confident, trustworthy and brilliant. she is also beautiful which of course is nothing to sneeze at (why do they say that?).

i ask the server her name. i tell her she is a delight and very good at her job. he seconds the motion and tin lizzie pipes in as well. jessica is smiling and saying how much that means to her.

she looks at me, i mean really looks – at me. she says ” you look like such a happy woman.” i tell her i am and as i recall the days spent with him, laughing with my sister, laughing with my friends and just feeling so warmed by the laughter and love i having been gifted. i return her smile and say “jessica life is just so good” “it is just so good.” she gets it and thanks us for including her.

my body is tired, no, actually my body is exhausted. the fluid has built up so i can barely breath. the pills will help some but not enough. all i can think of is the laughs shared, the reminder that i can still help him feel more empowered, the immense joy that my sister will be here in just under 2 months, the w

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the irony of Being Mortal

April 12, 2015 at 4:21 am (Uncategorized) (, , , , , , , , , , , )

there are so many things i want to say.  the most difficult thought for me to impart is the physical pain and exhaustion i feel every day.  most days i sleep until the afternoon, or the early evening.  when i get up to use the bathroom, often with the hope i can get my day going, it takes so long i worry about making it in time.  that is a shameful thing to share here with you but how can you understand if i am not honest here.  there is pain throughout my body constantly now.  i can feel each and every fiber of my body, with the exception of the times that i have the numbness from neuropathy.  often i stagger and find it hard to prevent myself falling.

i was naive to think i could keep doing this blog at a normal pace when i am progressing with my heart failure. of course there is also the (non-alcohol) related cirrhosis of the liver. there is a long list of other complications that i find too tedious to list.  when i am awake but unable to actually get out of bed or out of the recliner i think of things that i want to make sure i say.  i often look at my laptop sitting a couple of feet away and am over-whelmed with the idea of actually picking it up. then there is the part of putting together comprehensive thoughts.

a couple of months ago we watched a documentary about a doctor who wrote  a book entitled Being Mortal.  he wanted to understand how to have better conversations with patients who were terminal and had reached the point where modern medicine could no longer enhance their life.  his own father was diagnosed with cancer and they found it difficult to have a conversation about what was about to happen.  the ironic thing was he said “what i found missing in every book was the voice of the patient.” yet here he was writing about the subject of dying and again there was not one patient voice. it was other drs explaining how they were handling talking to patients about palliative care rather than further treatment.

as time goes by i have more understanding. patients are just too damn tired and don’t want to use valuable energy to teach healthy people how to treat them.  for the second time in just a few months i have heard friends relay to me that they have not seen someone who they are friends with, and the person is terminally ill, as retreating.  i say to them is that person retreating or are you just not taking the time to go see them?

visiting someone who is terminally or even chronically ill can be frustrating.  sometimes in our optimism we say yes to  a plan one day but the day of the event we are unable to function.  does that mean we don’t want to engage? HELL NO! it means you are going to have to be understanding. it means you are going to have to be creative. it means if you are really my friend get your behind in your car and come to me.  it means you may be sitting in bed next to me or in the double recliner with me and yes you may have to make an effort to carry the conversation, you may have to bring pictures to share or read to me.  it wouldn’t matter to me if you just spent 10 minutes just sitting with me.  of course i don’t say this just for myself, there are so many others out there who are spending their last days alone.  i am blessed to have love around me, even saying that i must be frank and say he needs a break sometimes.  every time there is any opportunity for him to get out and socialize i encourage him.  what holds him back is that i will be alone and then what?

oh i will have my amazing, beautiful in spirit as well as on the outside, sister here in a few more months.  she will also need to go her own way in order to fully life her life.  i have some other ideas on the back burner though so no worries here.

just remember that your time will come and ask yourself what would you like from your family and friends?  now do exactly that for someone you know who is suffering from any type of illness and make their last days their best days possible.  when you give kindness it comes back to you.

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when the dream ends

April 2, 2015 at 7:11 pm (Uncategorized) (, , , , , , )

the dream ended and i became aware that i was no longer in a deep sleep. my eyes aren’t open yet. my arm feels like it is swollen and i can’t move it. my fingers, my hand and part of my arm are all paralyzed. i can remember just a few short years ago my eyes would have been open and i would have been making my way to the shower. that was then and this now. strange but my limbs don’t seem to want to move. these days i can only lay comfortably on my left side. guess it has something to do with my heart and the ICD. it has been years since i was able to lay on my back. while in the army i had an incident where i sustained a spinal injury along with some broken bones. this left me with a limited number of positions. there are times when out of frustration i sleep in the chair. this is not my favorite thing to do as we miss each other. at times he will come out and sit next to me. he never complains about this disruption. even though my eyes are closed i can see where everything is. i know the pictures on my side of the wall. four of them were taken in one of those photo booths about 20 years ago. just a few weeks ago, while at the movie, we saw a photo booth and decided to go for it. odd to look at the younger couple so many years ago and the people we have become. as i lay in the bed i said in my head, i am dying i am going to die i am going to die and it doesn’t upset me how does someone live with this? how do you go on with your life for today? how can you be so calm in the face of this very real fact? you do it the way every human that walks this earth. we are all dying aren’t we? some of us have conditions that make ours a bit more imminent. anyone could decide that it is too scary, some actually do and don’t live their life to the fullest. there are times i think, especially lately that we just can’t make any more trips. we are going to the ocean here at the southern georgia. we will be staying at the St. Simon island, we have stayed near there but not at this particular island. we are choosing 2 queen size beds instead of a king because even after all these years we want to be able to reach over and touch the other person, to say i love you and to sometimes hold hands. this is also a fact. unless of course i die before we go, and that would not be cool. of course! this thing is going to happen sooner than later so i will in fact die before, during or after one of our trips. at least, i am hoping that it will not be during. that would be a real inconvenience! ah life can change so quickly. we have decided, based on the last few days, that i would have a difficult time and that would make it less enjoyable for him. of course i am disappointed we are not going to be able to go to charleston this easter. this was supposed to be sort of a consolation prize:) now i have weeks where i can’t get out of bed, the last couple of days i am unsteady. this means i can’t stand on my own, i try and this leads to falling. sometimes it is like a game where i just sort of bounce off walls, furniture or him if he is standing close by. it was probably not a great idea to be out earlier. of course i just wanted to get out on my own and thought since i was just close by it would be ok. while in the store i used a cart, thought that would do it but i had to go in the fitting room where i could sit and sort of lay back (take a little nap) then went to the parking lot to wait for the call letting me know the weekly thursday early dinner was going to be close by. it was wonderful to see everyone and meet the new boyfriend of one of the ladies. at the end of the meal, we all left and i got in the car. i was so tired i couldn’t pull it together and drive. again i sat and closed my eyes for a short time. my sweet man was waiting and wondering where i was. i need to add a note to my living will that is in the car. there need to be directions for him to follow. there need to be phone numbers, he won’t have any and doesn’t know how to use my phone that has everyone’s number. these are the things you think about when you are dying. it probably wouldn’t be a bad idea for anyone to think about. of course we don’t like to think about such things happen to us. we are home and all i want to do is close my eyes and listen to the world that wraps me in its arms. yes i am dying but first i just really want to write that note:)

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four leaf clover

March 22, 2015 at 1:57 am (Uncategorized) (, , , , , , )

on the cover of a st. patrick’s day card from a friend-

you’re like a four leaf clover

on the inside-

rare

lucky

kind of a freak of nature

 

i can relate to the lucky and maybe the freak of nature. rare?……… not so much.

to have this life is proof of the lucky.  to have the love of this amazing man, to have this family, to have these friends, there are times it brings tears of joy to my eyes.  do you ever just lay in the bed at night just before you go to sleep and think,  think about how completely awe inspiring life itself is?

when i met him my life was barren, desolate, just plain sad.  a widow of a year and a half, facing my 38th birthday without joy or hope for a better life when he comes walking down the street with a bounce in his step and what can only be described as a jaunty style, he simply glowed in my eyes.

i fell in love that day and have remained so some 23 years later.  that is more than i ever would have hoped for,  everything changed for the better from that moment on. lucky? yes i am, there is something deeper than that though. something so beautiful, spiritual and life altering that i am afraid to question it.  the question i have asked many nights? do i deserve this life?

my belief is we all have a path, a journey, or destiny that is unique to us.  we have choice in the direction or path along the way.  when i first laid eyes on him i had the choice to move forward with this new path presented or to continue on the path i was walking at the time.

to say that i am lucky is an understatement.  he loves me in spite of my being a freak of nature.  every night i think about how lucky i am, how my life journey may end when i close my eyes.  how i am just grateful for the time i have had with him.  he has suggested the possibility of his  going first is just as possible.  this is something i can’t let myself think about.  to live without him seems just wrong on so many levels.  when i explain this to him, he points out that i expect him to bear that burden.

what he doesn’t know is that i am doing everything i can to make sure he has the support system he needs to make it through the event and keep moving forward.  he is loved and cared for by many.  as the time moves closer i try to picture what this path will look like for him.

it is late and my body is ready for the sleep that will restore me and prepare me for the brunch with my lovely step-daughter heather.  i will be meeting my step grandcat tomorrow.  i am lucky to be walking down this path. i am grateful to be walking down this path.  whether i live another day or another week, month or year i am grateful for every moment i have been given.

no, i am not rare, yes i am lucky and a freak of nature.

 

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leaning in to love

March 15, 2015 at 10:42 pm (Uncategorized) (, , , , , , )

it’s sunday and i have been up for 8 1/2 hours. that is a record for this week.  every day has been much like moving through quick sand.  the angina pain has been relentless once again.  even the nitro has not kept it at bay.

almost every day i have made plans thinking i would rise to the occasion.  it has not turned out to be true.  having to send a text canceling or letting him make the call and the apologies.  each day thinking this day would be different, today i will rise and have the strength to be the companion my love deserves.

my love is so tender when he climbs in to bed next to me.  his hand reaches over and lightly rubs my back.  i love his hands. he says they are gnarly with age but that is not what i see.  i see the hands that held mine in good times and bad for 23 years.  i see the hands that took mine and promised to love and honor me, the hands of the man who has kept that promise.

over the years he has adorned my hands with lovely jewels.  there is none more treasured than the ring given to me on our wedding day.  all i have to do is look at that hand with the ring and remember the love we share regardless of how many hours i am awake.  his love has never wavered, i think i can relax and lean into him much the way i have leaned in to the pain that makes great effort to hold me.  there is no greater comfort, no drug eases the pain in the way holding his hand can.

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