This is my grief.

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There is nobody to share it with because nobody else understands my grief.   Many can empathize because they are going through their own grief.   But your grief is your grief to deal with and while we can all commiserate with each other, you know your grief and I know my grief.

I might be perceived as a grieving widow.  The assumption is she’s fine and is doing well. Nobody understands my grief.

I get up every day (thank you, God) and (mostly) do the things that need to get done but it is a struggle – every single day.  Nobody understands my grief.

Don’t feel sorry for me because this is my grief.  This is my pain and I will gladly suffer grief because I have seen what physical and emotional pain does to a person.  I watched it for 4 years with my sick husband.  Oh how strong and courageous he was … You don’t know courage; so much can be said for what we choose to show the world.  He was never a dramatic person so why bring drama into the mix?  Nobody wants to talk or hear about the downside of cancer.  It’s not death people – death is a welcome end to the misery.

My grief isn’t just the loss of my husband – it is all those 1,506 days from the very first phone call that there was a problem with his health. The tests kept us busy and then the diagnosis – we both died a little that day and the grief began.

Grief is about who was there and who wasn’t there and figuring out in your mind how to forgive those that weren’t.

When you have taken care of someone for so long, and watching the horrors of what the mind and body goes through in a slow, methodical death, you don’t ever get to forget that and over time, it becomes more prominent in your mind than when you were going through it. I am not just talking about physical pain.

I would not expect anyone to understand my grief,  it would be impossible because there was not a single person who lived with that man and intimately saw what I saw. So much was not for public consumption.  Nobody understands my grief.

Have I lost all of my marbles? It’s possible that during those 1,506 days I lost many things. It is now, nearly 14 months post death that I am starting to understand my grief. It is not just the death it is the hours, moments and days in between diagnosis and death compounded by the insurmountable sadness felt at being alone.

I know I have a support system. I have people who care and so many people who are going through something so similar, but completely different.

This is a process, I know.  The many stages of grief described have not been applicable in my case. One could not possibly understand my grief because there was no greater love than the love that we shared together, in sickness and in health. This is my grief.

God Speak

This post may be a little too “religious” for some of my friends, so if you want to scroll by, it won’t hurt my feelings!  You know why?  I’ve been to Easter!

I was given Christian religious instruction growing up … Baptist and then Methodist and a bit of Catholic thrown in.  At eighteen, I was a Catholic convert.  I left the church after my divorce from my children’s father and an ensuing Annulment.  The resultant theory at that time was that my children were bastards.  Not so – they were conceived in love by the love of God.  But the “shroud of shame” felt left me hurt and feeling less than inclusive.   I joined the Lutheran church.  I have never attended any church regularly other than growing up and except when I was Catholic.  Once a Catholic always a Catholic, so they say.  So here I am, my daughter is going through RCIA (The Rite of Christian Initiation of Adults) in the Catholic church so I have joined her on a few occasions and this week, Sunday, Monday and Tuesday (after attending Saturday evening mass with her) I attended a “mission” called the Running the Paschal Mystery given by an amazing man, Dr. Terry Nelson-Johnson.  If you ever have the opportunity to join in on one of his talks, Catholic, Protestant, Muslim or Jewish – do yourself a favor and listen!  Yes, there is a lot of Jesus talk – it is after all a Christian based Mystery – beginning with Holy Thursday.

What I learned during these evenings was mind-boggling.  Each night brought funny, sad and inspirational stories in Terry’s life that related to the “mystery”.  Here I am, sitting in the church, the holiest of all places and Terry is shaking a pom-pom yelling loudly “For God’s Sake” … now in my teachings, you just don’t say that.  It’s wrong, sort of like I am going to hell for saying that.  Well guess what?  For God’s sake, it’s okay!

I wish I could tell you (and even though I have the booklet and CD) everything that Terry relayed to us, but that would not be right.  Suffice to say that I am renewed and thankful and despite the trials that I have endured, I laid them down, just as Jesus did, on Good Friday.  Yes, he laid down his burdens.  All of this happens after having an amazing meal with His friends the night before.  Terry brought us through these days (and what day Holy Saturday is …) as if we were right there, but in modern time!

One may not agree with all the teachings and heck, even the Pope now sees things in modern time … I bet Jesus didn’t agree with a lot that was going on either and he just did the best he could under the circumstances.  So this “Running Paschal Mystery” begins with Jesus running a marathon and stopping and calling us to finish the race for him … brought together with shouts of “Jesus, Jesus, he’s our man …” you are not sure whether to laugh, cry or get up and start running through the pews!  Seriously, that’s how engaging this is!

What Terry does is make parallels of our lives with the days.  Holy Thursday … what is Holy Thursday to you?  Part of me feels my Holy Thursday died on 12-9-14 but then I turn and see my daughter and her fiancée dealing with two blessings of a six and four year-old.  Ahh, this is my Holy Thursday.  Tomorrow Holy Thursday may just be different.  I’m thankful for whatever feast feeds my soul.

Not one among us has ever missed Good Friday.  Good Friday is whatever burden lies within.  Ill health, finances, death, mean-spirited people, judgmental people, brokenness – it is whatever is the opposite of Holy Thursday.  It is a Good Friday when you can lay those crosses we bear down.  I have seen plenty of Good Friday’s in my lifetime and I was able to lay them down at the foot of a beaten up wooden cross.  The affirmation that this is just what Jesus did and there He was, pom-pom in hands saying “Therese, Therese, she’s our woman, if she can’t do it, no-one can.”  And so I did.  It was such a Good Friday!  I let the pain and the heartache of the death of our son (Keith’s oldest son) breathe a new life into me.  I let the loss of my brother so many years ago, give me the boost I needed to lay down the heartache of the death of my sister and I felt their energy give me the energy to lay down my biggest burden, to fully give it to God, the death of my husband.  None of this was done without tears.  Not one bit of any night did I not sob, along with so many others in attendance.

I’ve laid down these burdens and it’s Holy Saturday and I have to wait.  Do I sit vigil and wait for it for God’s sake?  No way. I join-in-community with others and share the good news.  In my faith, yes, Jesus is coming, but He may already be here.  I hear a story of Terry’s mom in her ninety’s and frail and her caretaker is a Muslim woman.  Terry’s mom, a devout Catholic, insisting that her Muslim caregiver pray at her bedside and not out in the hall – and in turn teaching this woman to pray the Rosary.  OH, there is no need for Good Friday in that!

This, my friends is what Christianity means to me.  It is not exclusive, it is inclusive.  It doesn’t make me less of a Christian to believe what I believe, for God’s sake – just believe.

And now, it all comes down to this – Easter.  Easter is the promise of a better tomorrow.  Easter is death with the most glorious of sounds.  Easter is life.  It is new life.  You felt it, you saw it, you tasted it and you broke bread with it.  You gave those burdens to Him.  You waited long enough – it’s Easter, for God’s sake.  Enjoy the new life, you’ve earned it.

Two more things that I took away from “Running the Paschal Mystery”

  1. Have you ever seen the picture of laughing Jesus? First time I saw it on social media, I thought, boy that’s not right.  laughing JesusOne story can change an image in your mind forever.  Imagine I’m begging you, it’s Holy Thursday and Jesus just invited a bunch of his nearest and dearest … why not show Jesus laughing holding a glass of wine!  Eat it!  Drink it!  Enjoy that meal and community with Him!
  1. Despite growing up different religions, we always said the Catholic Grace before a meal: Bless us oh Lord for these thy gifts which we are about to receive, from thy bounty, through Christ our Lord, Amen. My grandkids say: “God is great; God is good, let us thank him for our Food, Amen.”  Same prayer only different.  Terry Nelson-Johnson says grace throughout the day to many circumstances… Bless us oh Lord for my eyesight, every morning when he wakes up, etc., etc. – The lesson in that, for me, the more thankful we are the more thankful we present to the world.  Oh I am thankful!

Bless me oh Lord for my family, for my children and for my burdens which you have taken to give me the most blessed Easter.  I am home, I am home.  Happy Easter!

If you are ever in the Chicago area, look up Dr. Nelson-Johnson and attend one of his “Running the Paschal Mystery” – I guarantee you will not be disappointed.  http://soulplayonline.com/

 

 

 

 

 

Ripples and Circles

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This photo was taken off the shore of Waikiki, two blocks from Diamond Head, in June of 2012 during our first visit to Hawaii.

A slight wind or pebble in the water will make a ripple and spread out to sea.  Keith is a ripple inside of me.  With his love and with my memories, I brave the  often-times tumultuous waters. Life is full of ebb and flow and I am grateful for the ability to ride these waves.

I wrote this on Keith’s CaringBridge site on January 28, 2014 as the decision was made to bring him home from the hospital with Hospice Care:

“Both of us believe today that no matter what transpires, our love will cross the heavens and earth and will hold strong until our souls are entwined again. We believe God mapped this out for us. He brought us together because He knew what each of us would need from beginning to end. I won’t pretend to understand how God knows I am the one who will endure, but I have faith enough in His purpose for me.”

As promised in my last blog update, I have some exciting news to share – I know I am a week delayed, so hopefully nobody has held their breath for my news!

Effective this evening, I am officially a member of the Board of Directors for the PMP Research Foundation.  

This is the full circle that I mentioned before.  What does full circle mean, anyway?  We all start somewhere and we end somewhere; first the womb, and (my belief that) in the end, heaven. But the middle holds a lot!  I met Keith, we fell in love, we created a beautiful life and then he died.  That was a full circle.  Lucky for us, we can link these circles together, and my joining the Board, does this!  It is with Keith’s love and I know, his blessing, that I continue my personal advocacy, awareness and support for those being treated and who will be treated for appendix cancer and pseudomyxoma peritonei.  Forever linked with these memories of Keith, the decision I made a year ago to be a background volunteer for the PMPRF has come full circle!

This is a huge personal gain,  for those who know me.  I am very much a team player, but have always preferred to play in the background.  The time for me is now.  With the support of my family and friends, and especially the other Board Members, I am ready to tackle my very first national public appearance on behalf of the PMPRF.  Arizona here I come!  I can’t think of a better place to be on Valentine’s Day than to be supporting our organization with amazing love in my heart!  One of the best things Keith did for me was to constantly tell me that he was proud of me for helping others all throughout our marriage.  The key for me now is to remember his sweet words and carry them with me.  After all, it is because of him and my love for him, that I am paying his life forward.

A little background of the PMPRF:

The PMP Research Foundation is an IRS-designated 501(c)3 charitable organization. The Foundation was created in 2008 by a community of individuals affected by Pseudomyxoma Peritonei (PMP), Appendix Cancer, and related Peritoneal Surface Malignancies (PSM).”

“Our organization exists to support and fund promising research that moves us toward a cure for pseudomyxoma peritonei (PMP), appendix cancer, and related peritoneal surface malignancies (PSM). We also endeavor to support the PMP, appendix cancer and PSM community of patients and their caregivers by providing the latest, most accurate information about the best practices in managing their disease.”

The truth is I am still so very much in love with Keith.  I can’t help but believe he is also in love with me – eternally.

 

 

Goodbye 2015

Hello 2016! 

To_VID8854night will be only be the second New Year’s Eve I’ve spent by myself in 55 years. I don’t mind really; I plan to make myself a halfway decent home cooked meal, and count my blessings for what I have to celebrate.  And I know, though I cannot physically feel him, Keith will be holding my hand.

Gratitude!

To those who read this blog, thanks for always encouraging me to continue.  It’s been a year since I started writing here and it has helped me a lot to deal with the grief of losing my husband and in the process I share these thoughts as honestly and openly as possible.  While sometimes it may prove to be too much information, they are such raw feelings when they make their way to paper for whomever chooses to read.  I’ve always been a writer and that was the one class that I excelled in during school.  It comes easy to me – easier than speaking because I can pause when I want to and just type away and go back and edit my many run-on sentences.  I’m glad the grammar police haven’t found their way here … yet!

I want to thank my on-line friends for being here for me 24/7 and for those of us who have built amazing, life-time friendships, wow – who knew?  I freely admit to being an on-line junkie.  I spend from the wee hours of the morning to late hours at night here.  And you’ve all been there with me throughout the day and night!

Thank you to my friends and family that have checked on me and spent time with me – you will never know how much that has meant to me and I know, because Keith and I talked a lot about that; what would happen after he was gone, would friendships struggle going forward.  I can honestly say that some friendships were actually strengthened and have become more than an occasional acquaintance over this past year.

Some relationships have gone away and Keith and I talked about that happening too, but honestly they weren’t much of a relationship to begin with – for Keith or for me, so I’m working on the forgiveness aspect and moving forward in 2016 with those who care to be a part of my life.  People that make excuses that they are too busy or too whatever, really are not invested and it takes years of tears to overcome that harsh reality.  I have never had a problem with honesty, it’s the only way I know how to be, but one of my goals for 2016 is to be drama free.

So again, thank you friends and family that have been here – for the long haul.

Happy Trails!

When Keith was healthy we took a few road trips and we took a couple of vacations, but it wasn’t until we started living in the moment that our traveling really took off.  I think I got my maternal grandma’s gypsy spirit … of course I wish Keith were sitting next to me on the plane or in the car, but in some capacity I know that he still is.

So an amazing group of on-line “family” have gotten together to bring me to Florida in January!  I am blessed by a pre-paid plane ticket by a wonderful woman who I pray will be well enough to be there and for me to hug in person, and the homes of three beautiful women who have graciously invited me to stay in their homes.  When I was told of this trip, honestly, I was so overwhelmed with emotion that they would think to get me there (which I was working on anyway) but this just worked out so perfectly for all of us that well, again, I am just so blessed and grateful for their friendship.  Florida in January when you live in Chicago, yes please!

In February, I will be attending an International Cancer Symposium which requires travel to Arizona.  Arizona in February when you live in Chicago, yes please!  As a volunteer for the PMP Research Foundation, I will represent this amazing organization with pride.  We are an all-volunteer charity working hard by providing hope for current and future patients..  Funding research for this specific cancer is what we do, by generous donations and benefactors.  Supporting educational seminars is as important to the public as it is to physicians and we are proud to sponsor events like this.  Providing, up to date treatment information, clinical and research information is what we strive for.

And giving support to patients, caregivers and friends of those diagnosed, is important to me.  I was able to do this for Keith and in many ways, I am blessed to continue doing this through him and his never-ending love for me.

Changes

2016 means other changes for me as well.  My youngest daughter and her two children are getting married!  Yes, I did say the kids are getting married because they are a family unit and I cannot be more happy for her and them as this blending becomes an incredible mix of nothing but love.  I am blessed that I will have a son-in-law who is so caring, loving, hard-working and respectful to my daughter.  He reminds me so much of Keith in his attitude and ethics.  God bless their marriage always.

This marriage also means a change for my living situation.  My loving grandson (4 years old in the coming month) likes to remind me daily that “Grandma, you are a very, very old lady” and sometimes, with all the chaos in our house, I think he’s right!  I have never lived alone so once I figure out whether I sell or stay (although this is an awfully big house for one person) I am going to embrace the change.  Talking to a friend recently, she explained how empowering it was for her to live alone.  It’s just going to be different.  And I will finally get to be a grandma for these two kids, instead of another parent – bonus!

2016 means, as I said above, drama free.  I am not big on making resolutions because I usually break them (fairly quickly).  But I am going to try to eat better – I will never be perfect with diet because I love good food and I love bad food too.  I love donuts.  I love greasy french fries.  But to be really drama free, I have to be better at my choices so I don’t create a health drama!

Letting go of hurt and changing my way of thinking will greet me tomorrow.  Forgiveness is something I have worked on this year and I have not been very successful.  Some pain runs so deep that I’ve thought that only God can forgive those transgressions.  I prayed a lot and asked forgiveness from Him in my ability to not be so forgiving.  I have never intentionally hurt someone and if I have unintentionally done that, when made aware, I beg forgiveness.  I am not perfect; I am human but I do know that after the last five years of my life, there is nothing more important than being with those you love and making time for them.  I take nothing for granted in this life because it can change in an instant.  Forgiveness only needs to be in my heart and I think I have that worked out.  It will never change circumstances and will never change the past, but it will allow me to say, with a clear conscience, yes, I am able to move forward – without fan-fare, without drama.  I’ve learned that all I have to do is “walk away” from things that bother me, now that is empowering!

Happiness and Music

I am choosing happy.  One of the last conversations that Keith and I had been about happiness.  No, I will never “get over” his death.  But I am, as I have said several times, happy that he does not have cancer.

I am happy with the person that I am.  I am happy to do good work to honor this man who honored me with his love and with his life.  My love will always be with him, but as he always told me, “honey, you have the biggest heart of anyone I know”.  I believe him now – because I still have this ability to care about others.  I am not angry, really never have been and sadness sometimes creeps in for what may have been, but I am happy to be alive and happy that I have children and grandchildren and some parents still living; I have siblings and in-laws and cousins and aunts and uncles and friends!  I am loved and that makes me happy.

Music is also my happy place.  Some music shakes me to the core and I cry because it is so beautiful and speaks just to me –to my memories of Keith and us and to my memories of our son, my sister and brother and others who have gone before me.  Some music reminds me of friends and good times spent together.  And my favorite music is the music that reminds me of Keith and I where I literally get butterflies in my stomach because they were “our songs” and give me the feeling of I can’t wait to see him again feelings of love!  Those are the absolute best!

Happy New Year!

May yours be healthy and prosperous and full of love and friendship.  For me, I am counting my blessings.  God bless you all.

Christmas Wishes

 

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One of my favorite photos of Miss A. (photo by Jamie Kral) 2010

Dear Santa,

I’ve been pretty good this year.  A few blips here and there and I haven’t eaten as well I know I should, but other than that, I’ve made the mountainous climb to get where I am today.  You see Santa, I am a survivor.  No, I don’t have cancer and I am ever-so-thankful for that.  But I survived an entire year as a widow.  Being single has some major disadvantages when you’ve been a “couple” for so long.  I’ve been to church more this year too and I’m still trying to find the best fit for me in His house.

I haven’t written a letter to Santa in probably 45 or more years so this is tough for me to figure out exactly what I want, but I will give it a try.

  1. Peace for my six year-old granddaughter to not be so sad about her Papa and to not be disappointed when you don’t deliver her Papa to her on Christmas morning.
  1. Just one dream where I can see Keith with his big smile and hear his laugh and hear him say, “not a problem, honey.”

Thanks from your friend,

Therese

The rest of my wishes come to me in prayer:

  1. Peace that passes all understanding for my friends who have lost children and I have many who fit this category. There are no words to console a grieving parent though words are all that we have.  Age is not a factor when you lose a child; it’s just not supposed to happen that way to our human mind.
  1. Health to those who are struggling with illness and better treatment options for those with rare diseases, like appendix cancer, when the tried and true treatments don’t work.  Is a cure too much to pray for?
  1. Friendship for those who are lonely and struggle to face the day and for my friendships to be strengthened in the new year.
  1. Work for those who seek it and helping hands for those who are unable.
  1. I pray for the world to see random acts of kindness, with a focus on peace without hatred and bias, both within the media and in our hearts.

Amen.  Merry Christmas – Happy Birthday, Jesus!  I hope all of your Christmas wishes come true, too.  God bless you.

What a Year

As the title suggests, it has been one year since Keith died.  I am a widow; the very word I hated when he first died is who I am.   I survived!  I did it!  Yay me!  If that sounds a bit sarcastic, I suppose it is.  I don’t find survival enlightening, inspirational or anything more than what is.  Have you ever met a person whose voice has just a flat affect?  Yes, that pretty much sums up my feelings today.  Flat.  The high peak came last week on the actual day Keith closed his eyes; never to have them open again.  Sure he was breathing … but the transition was happening and he definitely was not in the “here and now”.

Yes, today is the first anniversary of my husband’s death. It is a day for me to remember how much he loved me and his family. It is a day for me to say what an amazing person he was and a day to acknowledge the gift his life was – to me and to so many others.

I’ve had emotional outbursts that, so far, have only happened when I’ve been alone.   A very large piece of me died a year ago.  The piece that held me together and made sure that I was always taken care of emotionally – just the look of “we’ve got this, babe” was all it ever took.

You cannot imagine the long days and even longer nights that have existed these 365 days.  And today they are all rolled neatly into a year of ups and downs with  never-ending gratitude for his life .  One day I literally sat in my walk-in closet and cried for what seemed like hours – it was only ten minutes.   Sometimes I cry so hard it’s difficult to know if I am going to cry myself to sleep or cry myself to death.  Something always brings me to the present and I emerge; red-eyed and swollen, maybe a little broken and sometimes, even guilty that I dare have  the audacity to cry – I am not the one who died after all.

I have learned that I am stronger than I ever thought I could be but I often do not feel complete anymore; at least not in the way that I was completed by Keith.  There have been days though, that I feel so weak that I literally have to force myself to stay engaged with life.  Many times I feel like I’m in a time warp.

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Things I miss. 

               His touch: softly on my shoulder just to say “I’m here”.

               His smile: as warm as the sun shining on me.

               His laugh: the one that would generate happiness every time I heard it.

               His voice: as sweet and soothing to me as a lullaby.

               His eyes:  gazing into mine with deep, tender, longing, love.  

              His arms:  wrapped around me tightly.

               His hands:  holding mine every chance he could.

               His breath:  the very breath that could take mine away.

I have lived this nightmare for a year.  I don’t want  this to be  a nightmare anymore.  I want to stomp my feet and shout “F— You Cancer – F— You”.  How unfair that he didn’t get to live into old age.

I suppose I could act out that tantrum anytime I want.  I don’t know why I don’t just do it!   Maybe because I know how blessed I am that he was my husband and I, his wife.  Perhaps because I have the most amazing memories of him and of his love and his devotion. He was never afraid to tell people about that either.  He got cheated out of growing old; that is what is not fair.

Now what?  Wouldn’t it be great if I could just say “okay, move on; step on the gas and just go forward”?  Sigh.  I cry every day.  I don’t dwell there, but holy cow; this pain is deep.  Keith cried so hard and so often toward the end and I was able to hold and console him through it.  Sometimes, when I am crying I almost feel him pushing the hair from my face and saying we will do this together – the very words I spoke to him.  Much like that day in my closet, I believe his hand reached my shoulder to say “I, along with God – we are here”.   When I have these days of doom and gloom, I let them happen and then I move on.  Some days turn into a few days, but they always turn around.  This is God’s promise to me –He will give me the strength to carry on until my work on earth is through.  He did not promise to make this easy for me, or for any of us, He only promises us everlasting life with love.  This is what I cling to.

I am woman blessed.  Keith died loving me.  He loved me for well over 20 years.  He used to say he couldn’t live without me.  I told him the same thing.  I was not wrong in saying that, however what I could have said is that I will be able to exist without you.

There is joy in my life, just not the kind I was lucky enough to have for 20 plus years.    I have love from family and friends.  I continue to be an active support and advocate for those who suffer from the very disease that took Keith from me – appendix cancer.  Early next year I will have some exciting news to share on that front.

One year. 365 days. 8,760 hours. 525,600 minutes and I have missed him for each one.

If heaven is as I believe with universe of souls who find each other after we stop to living in our earthly body, where no sadness exists, no pain , no suffering, no hatred or bias, then the heartache of losing Keith will get better.  If it doesn’t get better in this time continuum, it definitely will, in God’s time.

Oh but he is free now and I have to believe that he is waiting for me – no matter how long it takes.   God gave me an incredible best friend, lover and husband, in one amazing man – I am a woman blessed.

Be grief, but do not dwell there. 

Be well. 

Be love. 

Be hope. 

Be joy.

11-Months a Carousel

Keith Eternal FlameI remember through the years always hearing that as you get older, the time passes more quickly.  That could not be more true than it is today.  Where have the last 11 months gone that my love left this earth?

What have I done with this time?  Have I honored the memory of the one that completed me?   Have I made him proud?

As I methodically move through this next month preparing for one year, (which actually seems inconceivable to me) I realize that the 9th of the month holds such a love-hate emotion within me.  Surely there is something important that I am not remembering about all of this; some connection to a date that will forever be burned into my memory.  What hope was there when God said “Come with me”.  For the suffering endured, for the sadness and worry to end, a celebration ensued.  It was over.  That was it.  An Event.  I must get over the date and remember the celebration.  This is what I am going to work on.  I am going to remember the joyful fact that this man, my man, my love and my life is in a place that none of this earthly grief matters.

There is a surface on which I build my future.  One deep layer is sparked by that eternal flame living within me; the love that will never die.  God has promised me that I just need to turn to Him and He will see me through.  Good thing He is there for me because there are times when I feel so very alone.  This is the hard part.  Even still, His presence known, I have never experienced such an emptiness.  I can describe my sadness and grief at the loss of parents and grandparents and siblings, and I can describe the hole left by the death of our son.  I am lost.

I am the child that sits on the carousel, as the music continues to play that is searching quickly with her eyes for the parents who brought her there.  Around and around I go but there is no security when I stop.  Keith brought me to that carousel and I have nobody to hold my hand when I walk down from it.  I am alone.  There is no one or no thing that will ever replace the love and security he gave me.  But if I hold steadfast to my knowledge of all things beautiful will be together in heaven, then I will take this as my hand-holding moving forward and let the music continue to play.

I am really okay, but some days are difficult.  When a grandchild has such tears of sadness and sobs with the pain of missing her grandfather, those moments take my breath away.  They make my heart hurt physically and make me lose myself in the grief.  Today is a difficult day and I don’t mind sharing that, but I am still a woman blessed.  I am most-loved by an Angel in heaven.  I love you and I miss you, Keith.

Speed up! Slow down!

wordpress october 2015Grief is cyclic.  Tomorrow will be 10 months that Keith went to heaven.   Summer has flown by and I really didn’t get out in the weather much; we had a hot summer and I don’t do well in the humidity anyway.  I am not sure what I did during these months.  I can recount events, but the day-to-day it seems I just glide from one to the next.

I’m not sitting here pining away, but my mind, all day long, goes to where Keith is.  What is he doing besides enjoying eternity; surely he is spending most of his time watching over me!  That’s what we planned for – that’s what I hope for.  We could sit for hours across from each other and not say a word and it was great.  I knew he was there and he knew I was just a glance away.  Sometimes I make-believe it’s just like that now.  If I will myself into that mind-frame, I do very well.

Yes, the only thing constant is change and God’s love.  He continues to bless me abundantly.  My dear friend Denise shared a song with me that I play over and over – because you know, music is to the soul what nourishment is to our bodies.  The song is Sailboat by Brian Rector.  Do yourself a favor and listen to it!

Two important verses for me:

And I’m pretty sure I’m heard
At least I know I’m speaking
But I feel like a fool
Cause I can’t hear you listening
But I’m not giving up,
Oh, I’m gonna move on forward
I’m gonna raise my sail
God knows what I’m headed towards

Oh I’m out in the waves
And I’m hoping and praying
Please let this wind blow me home
And night after night
There’s an empty horizon
My God do I feel so alone
Sometimes life
And most times
I feel just like a sailboat

So much has changed since Keith died.  A very deep part of me died that day but with that death, also came a new growth.  I’ve come to understand things that I never thought I would.  I believe I have found the meaning of my life:  Love.  I was born to love.  I do love.  I don’t mean romance because for me, that romance still exists.  I mean love for life and for others and for doing for others.

I am constantly reminded of a spirit that moves with me.  Truthfully and wishful thinking it is Keith, but it could be our Heavenly Father.  When we make it Home perhaps we are but one spirit.  So bright and so brilliant that what we search for in this life becomes so trivial in comparison.  So for me, living with love in my heart, expecting the pain and the loneliness to continue which carves my future, slice by slice, I can enjoy what I have.

I am human and I fall, but through heartache, at the end of the day, knowing in my heart that I did something positive, said something kind, hugged a crabby grandchild, rejoiced in the happiness of a newly engaged daughter and give thanks for my blessings, I can sleep peacefully.  Even if those precious hours of sleep are few at a time these days, I am sleeping.  If I truly pray, every day, which I do, then my life is complete.

Speed up!  My thought sometimes is to let life move forward quickly.  Slow down!  My reality is that I am taking it one day at a time, slowing down those thoughts, and doing so with love in my heart.

Loss, Love and Paying Tribute

I am here.

I am here.

It is difficult to console the inconsolable heart.  Each must experience the pain of loss or it will never leave us.  I’m not describing loss of love.  I’m describing loss of life of someone who made your world every bit as wonderful as it could be.  Be it a spouse, a child, a sibling or best friend.  Maybe you have lost a parent, grandparent, an aunt, uncle, cousin, a mentor, or a partner.  We always say “I’m sorry for your loss” but we cannot possibly feel another person’s loss.

People think they know the depth of your loss but they don’t.  That is what we call empathy and most of us are capable of feeling that.   Many of us can empathize with others.  But nobody can feel what is in your heart during such a personal, tumultuous time.  Think of times that you have realized loss through death.  Like most, we are sad and move forward and sometimes we become stuck in a place where every waking moment is wrapped tightly with emotion of that person. I’m in between those places and it is a good place for me to spend my time.  Sounds odd, right?  Actually I have found moving forward and being bombarded with beautiful memories, the perfect balance.  Memories are the driving force behind getting out of bed and living my life the best I know how.  I do not believe for half a second that I would have been able to do this if I had not had the best of the best as my husband.  What he gave me personally in my life will always be enough.  But he is where there is no more cancer, no more fear of what tomorrow might bring.  He is in a place that only peace and harmony exist.  His spirit is alive and well within me and that is a beautiful place for him to rest.  I am glad Keith was a patient man, because now he waits patiently as I live my life – day by day, month after month, and hopefully year after year.  Thanks for the memories, Keith … may they continue to keep me lifted to this place of peace.

Keith spent his 60th birthday celebration in heaven, on Sunday, August 23rd.  I bet the angels sang beautifully!  We had some chocolate cake and sang happy birthday to papa – it felt good for us to still do that and be thankful that we had the time we did with him while he lived.

On Saturday, August 22nd, we celebrated Keith and our memories of Keith during our annual fund-raiser.  Thanks to generous donations, we raised $11,350 dollars for The PMP Research Foundation to continue their efforts in Research and Education.  They will also “give back” to Dr. Salti, for his programs that directly impact patients with appendix cancer and pseudomyxoma.  It was a wonderful day and I know that Keith would be so proud and so happy to know that people still care.  People still come out to share his legacy.  I am not, by any standard, a public speaker.  I did not like it in school and I do not like it as an adult.  But I forced myself to get up in front of the crowd because I had a few things to say and because I was and am, so very grateful for all of those who donated and those who attended both in person and in spirit.  Here is a copy of that speech:

Let me start by thanking Kimberly for all of her hard work and dedication! Without her, many of you would not even know about this event. She has worked tirelessly to get donations for today and there are many. Thank you Kimberly for all you do in dad’s name.

First, some of you know that I am a volunteer for the PMP Research Foundation. Funding Research and Education along with patient support through email and social media websites is their purpose. In 8 years, they have received through private donations and fund-raisers such as this, well over 1 million dollars. They have provided funding of $750,000 for research into appendix cancer/PMP with another $100,000 to be awarded in December of this year. I am proud to work alongside them in whatever capacity I am able and believe with all my heart that Keith wanted something like this for me. If I can help just one person, through volunteering, my life will be well-lived.

Second, thank you to Dr. Salti for all that you do. It is my personal goal for the Appendix Cancer and Pseudomyxoma community to know you as I know you. An expert surgeon as we call you in our support groups. I want people to know your dedication in performing these surgeries that are grueling and lengthy – Keith’s surgery was 12-hours. I want people to know that you are not just a physician who treated Keith, but you are a part of my family. I am also proud to be a part of your team going forward as a support to others as needed. On October 6th, Dr. Salti and Edward Hospital will be holding a Cancer Symposium sponsored in part by the Research Foundation. It is free for the public to attend. Check out Edward’s website or pmpcure.org for information. Thank you again Dr. Salti, for your experience, expertise and especially your dedication to your patients.

Last and certainly not least, most of you knew Keith as a strong, powerful man. He was that way, but there was a side of him that made me fall in love with him – It was the twinkle in his eye and believe it or not, his shyness. Most of all, it was desire to be loved. I loved that man with every ounce of my being and he was so afraid that after his death he would be forgotten. Despite a building and a complex bearing his name and family and friends who have gathered here, that was his biggest fear. On behalf of Keith and on behalf of my family, thank you for not forgetting him.

We will continue our efforts for as long as people continue to support us and Keith’s memory.  As my daughter told me, “mom, if that ever happens, you and I will still go to five different bars and celebrate dad”.  I hope it never comes to that.  I hope we continue to gain support through the years for Keith’s memory; obviously our driving force, but for the many others who have lost their lives to appendix cancer and its variant pathologies and for those who fight every day.  I hope the future holds a cure, that’s our purpose – but until that time, we must individually do what we can to help others.  That is what we pray for, that is what we focus on.

Truly, the man I married … I thanked God while he lived for bringing us together.  I still thank God for that.  The true measure of a man, I believe, is the indelible mark he left on the hearts of others.  What Keith left on my heart is so deep that his dying opened up a space that only memories of him can fill.

The Thrill of It All

If I wanted to go to an amusement park, I would have bought a ticket. Mind you, I enjoyed the thrill of the ride when I was younger. I never thought much about the mechanics and how one loose bolt could alter your life forever. Well at least not at a younger age. I’m older now and my mind has changed from the carefree, thrill-seeking days of yore.

Truthfully, I am OK. I am okay with the uphill climb sitting in the rail car. I’m good with the twists and the turns at a high rate of speed. It’s the sudden drops that I struggle with. Those drops come with crocodile tears sometimes. You feel them coming but you are able to control it and then whoosh! With the speed of a spiral drop fall the tears.

This happens quite often; those “oh no, here it comes” moments. Recently I’ve had some health issues and had gone to the doctor. This doctor was part of Keith’s care team and actually the one who broke the news to him about the cancer. The nurse asks the usual questions after taking your blood pressure and asks about medications and changes in family history. I said, no just changes in my family dynamics and mention that my husband passed away in December. The usual “I’m sorry” niceties happen and she left the room. The doc came in and we talked about what’s going on with me and he went to check some recent labs and then came back in to discuss them. He walked out and then walked back in and I thought he was going to cry – the nurse must have told him. Nobody internally told him about Keith and he wanted to say how sorry he was. I thanked him and then he started about what a wonderful man he was and how strong he was and he just wanted his part to do whatever he could to keep Keith comfortable. This is the second time I had to explain (including to our primary care doctor) that Keith passed away. So here came the roller coaster, creaking and winding its way to the top and BAM! The tears started flowing as I said yes, I miss him terribly, voice cracking and crocodile tears streaming. I felt like I just want to get the hell out of here and not deal with this. But of course, I wiped the tears and smiled and thanked him for his kindness. I am certainly glad that is over with! In the end, Keith abhorred this doctor … he felt cheated by him and I think because he is the type of doctor that just wants to help, when he couldn’t help, it was hard for Keith (and me at the time) to accept some of the things he said to Keith. He’s just too nice and it’s hard for him to say “it’s not going to end well”. I’m over that because I feel he is a good physician and I have been going to him for many years so he knows my history.

One would think (I wish everyone thought like I do) that it would just be an automatic process – while Keith was a hospice patient, he was still under the care of oncology in our group of physicians.  I personally notified his surgeon because I maintain a professional relationship him. I guess I didn’t realize it was my burden to notify all physicians.

I am finding more confidence in myself as the days go on and thank God for the strength that He has given me to endure. Certainly there are days that I feel like it’s not fair, but it is what it is and I can’t change it. Boy, if anyone knew me 25 or 30 years ago I could have never said that! I remember how irritated I would get at the words “Rome wasn’t built in a day” and I would think (not always to myself) – what the heck does that have to do with anything. It wasn’t until Keith got sick and we wanted immediate results, immediate answers that we realized we had to build foundations, brick by brick, to get a solid plan in place. You can liken phone calls and paperwork to that process. In retrospect, all that building and planning and infrastructure of keeping Keith alive for so long was to help me cope today. It was an on-going blue-print with a completion date known only to God. And definitely not built in a day!

I am now my own building and currently undergoing renovation. I neglected things (myself) during the past year especially, despite Keith begging me not to. Now that things have calmed down, I am listening to his voice in my head and keeping yet another promise.

What is it like to be lonely? I frequently leave the TV and music off to listen to my thoughts because there is so much noise in my head that the competition of the electronics gets annoying! Unfortunately these days my brain is working overtime and not letting me get a good night’s sleep. I must be dreaming a lot and not know it and those dreams must be in a boxing ring somewhere. By the looks of my bed in the morning, I’m fighting off someone or something! Seriously … I think I’m looking for that guy that I slept with for over 20 years.

Doors close. Doors open. Although the roller coaster will continue, I am finding peace. Grief truly does not have a timeline. I despise that my husband died. I despise that I am left to pick up the pieces by myself and live the rest of my life without his companionship. But somehow I just can’t be angry about it. I think that if I was angry it wouldn’t be painful, but how can I be angry when God gave me so much to be thankful for in my life with Keith. As I lessen my hurt, I am able to feel Keith’s presence more and more. I have moments like I did in the beginning where I can just take a deep breath and slowly let it out and feel his embrace. When Keith held me, it was always the only thing to truly ever bring me the most calming peace I have ever experienced. I miss that but my memory is returning as I let go of the hurt. My heart will never fully feel what it did but that doesn’t mean it isn’t open to new ways for me to find joy.

I am looking forward to August 22nd to celebrate Keith’s life with those who truly cared about him. Those folks who are able to physically join us for our annual fundraiser, the pub crawl, probably have no idea how their keeping Keith alive in their hearts makes me even more proud of Keith – is that even possible? I hope that I don’t experience too many of those big roller coaster drops that day, but if I do, they just may be tears of joy.

I am also looking forward to my first experience at a symposium hosted in part by the PMP Research Foundation and Dr. Salti at Edward-Elmhurst Hospital taking place in October.  I am grateful that I will sit at a table representing the Foundation knowing that Keith’s life mattered and all of those facing or who will face this disease have hope for the future.

I am looking forward to the Amusement park after all. I want to ride the Ferris Wheel and watch from the top, to see what heaven sees.  For now, I am just looking forward!