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Reply by KathCull_admin
01 Feb 2015, 2:16 AM

I am coming again, to what I consider to be a deep well of comfort, to ask you to consider offering support to another member, Jaindough on Bleuuurrgh.  I think she would appreciate your words tonight. 

Thanks so much


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Reply by Jimmie
01 Feb 2015, 12:57 PM

I have been living in the belly of the beast at the bottom of the sea.  Our youngest granddaughter who has been sick since birth has been diagnosed with an extremely rare, untreatable , life threatening auto-immune blood disorder which  will substantially, substantially reduce her life span.  Yet another untreatable, fatal illness visited upon our family.

At the same time, regardless of changes in medication Sarah now insist upon waking at one or two in the morning and relentlessly and physically demanding we start the day.  Now I am left with three - five hours at the end of the day to rest and recover before the circus begins again each day.

Little Maud's diagnosis and prognosis was profoundlandly devastating for all of us to receive. It just seems like the fates keep adding more and more incurable illnesses upon us body and soul -young and old.  There's no end to it.  It just goes on and on and on - one generation into another.  IT is exhausting for all of us - all of us.  I can handle my own illness, but it breaks my heart when I consider the deep grief of my children and now of their own children.  All illnesses untreatable - all illnesses offering no hope - making the future something to deplore rather that exalt because the only thing that comes with the future for them is the advancement of their illnesses.

I live in the belly of the beast at the bottom of the sea.  I will be vommitted out sooner or later upon a rough gravel beach at the discretion of the landlord.  Right now I am broken by grief and despair.  I need to lie down somewhere on my back and ask to be restored. I need the sun to dry my clothes and warm me once again.


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Reply by oldbat
01 Feb 2015, 1:41 PM

Oh Jimmie, dear Jimmie,  I am so, so sorry to hear about the events that have devasted and traumatized your life and your family.  You are, indeed, in the belly of the beast at the bottom of the sea.  I only wish that those waves that have brought you so far down can and will, at some point, turn and carry you to a safe and peaceful resting place. I realize that this must seem like the impossible dream right now  But, as we have all learned, hope can arrive in strange and wonderful ways. 

Please know that we are, all of us here at CVH, loving you,caring and praying for you.

I am lighting candles to pierce your darkness and send you endless sunny hugs to warm you, if only a tiny bit.

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Reply by NatR
01 Feb 2015, 2:41 PM

Dear Jimmy and everyone,

Jimmy the whole group here has been worried about you and your quietness lately.  It appears that they were right to worry...and I have to add a couple of things to what Oldbat said.

I invite Xenia to also add her comments as she has recently been walking in your shoes
You must know that as a caregiver our energies are not endless.
From your note, Jimmy, I sense the fatigue and the end of your energy to keep on doing this for Sarah 24 hrs a day.

You want to do it, you are devoted, you are caring for your beloved one...but I must say that you are experiencing Caregiver Burnout.

I would like to know what if any hours you get away from the home...I doubt you seldom leave.  It is something for you to consider however...as if you fall ill or can no longer keep on in this role, someone has to give some extra help and support for you both.

I have walked in your shoes, even when just doing 8 hrs at a time and going home.  Even the 8 hrs a day in a nursing home was exhausting both physically and emotionally.

Your love and devotion will not dissipate - your caring will not go away, but your body has physical need for rest and renewal.

I do hope you will find some way to lessen your load at home.  You cannot go without sleep and keep up to your wife every minute.  But having said that...you are a wonderful, exceptional man, husband.  Everyone here will I am sure agree with that.

Your kindness to us all, your word windows that let us into your life, your home, your memories have all helped us cope.  Now its time for us to help you cope too.

Can you reach out tomorrow to your community and your family or your doctor and get some ideas?  It is time...and I send you hugs with all of these words....hugs to support you and hugs to help you deal with the guilt that you will suffer...as I have suffered...for not being strong enough to do it all.

I must also address your other topic...the genetic condition that your granddaughter suffers.  You see Jimmie, I also can identify with what you are saying.

Almost 20 years ago my first grandchild was born to my daughter.  The happy and excited pregnancy turned into a devastating birth that required my granddaughter to be flown to a major city to be given intensive care in a NICU.  I think she was there for 3 months.

Finally the diagnosis came...a rare genetic disorder....un named, unknown, no details for her parents about life expectancy, care, signs to watch for, what complications would develop, what care would she need, would she die young, would she live long, would she require total care?

Yes, to most of the questions....lots of problems, lots of unknown issues that her parents and we as a family learned to deal with.

Frankly, I never have gotten over the fact that I (due to blood tests after my granddaughters birth) am a balanced carrier of her genetic disorder.  I felt so much guilt, I still do.  If only I could have known, if only we could have been aware, if only we could have saved this little girl from a life of frustration, limits, seizure activity, anger outbursts, non-vocal, needing total care for her entire life.  If only I could have saved my daughter and her husband, and my grandddaughter this heavy load.

It is a heavy load.  No matter how smiley you can be about coping, about support, about forms of therapy and strengthening exercises...there is no way to block out the fact that this 20 yr old eternal child will never know the joy of running, laughing, playing with others, growing up, meeting milestones that everyone else takes for granted...and never will have a normal life, a family, a husband, children, a career, enjoy things we all take for granted in our daily life...even just going for a walk.

So, Jimmie, I know your pain.  I maybe can help you meet it midway.  There is no way to do it over, there is no way to change it...all we can do is move forward.

I have been a caregiver for my grandchild as well as many many others.  I have learned that it is about Her quality of life, Her smiles, Her happiness...and whatever it takes to give her that...I do!  I know you understand what I am saying.  I just wanted you to know that I am with you in spirit.  I know how you feel...and your family members.

hang in there Jimmie....life is tough but you are tougher...plus you have a way about you with words, with actions...and you will be an important person for your grandchild...each and every day.

My granddaughters disorder is now named, there is much more information than there was when she was born, and my daughter raised awareness and brough families together from many countries of the world...all dealing with this same issue.  We are not alone.  Together we are stronger...its all the stuff we hear...and disregard, but seriously as a group we are stronger.

 I hope that in some way my words help you today.  We are all here for each other...I just felt I had to pour this all out...
be strong my friend,
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Reply by Xenia
01 Feb 2015, 7:51 PM

Dear Jimmie and All:

I wanted to have some real words of Wisdom and help relieve your pain but all I can say is I am sorry to hear about your dilema and this says very little.

 weep for you and your grandchild.  I know not your sorrow but I  feel it having just lost John 3 weeks ago.

I feel your need to shout to scream "why" and get no answer.  The waves of despair that come over you will tear you down but I do believe the softer waves of love and kindness and caring from all of us on CVH will flow over you and help soften your despair.

As others I would suggest you have had moe than enough and there is a need for you to seek help from someone you consider close enough or far enough from the situation to help you vent and get some relief from all you have been going through.

I can say no more as I know you are hurting with a wrenching in your body that needs to be released, the need to get an answer to why is this happening again to our family. There are priests, doctors, counsellors, friends and foes who ask why and try to give answers but that is not our forte....the answers must come to you from whence you seek them and then you may find some peace and rest.

Until then I keep you in my thoughts, my Higher Power and ask for the pain you are sharing with us will leave and you can find the waves of quietness and peace and tranquility soon.

Hugs and Love

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Reply by Nouce
01 Feb 2015, 9:54 PM

I weep with you, Jimmie! I light a candle for you.


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Reply by Jimmie
03 Feb 2015, 10:19 AM

There is a line by Joseph Campbell who wrote that "The souls of the dead surround you like the sea".  I used to use that line as a prayer, or mantra each time I was eased into the the confining doughnut hole of the CAT scan.  I would ask the souls of my dead friends and ancestors to form a protective, affectionate circle around me throughout the procedure. It was comforting to think of them gathered there. Amid the whirling sounds of the machine and chill of the room. I would wrap myself in the quiet warmth of their spirits.  We live in two worlds, a fact I often forget; a fact we would do well to remember.

Xenia, I could do with a large bowl of one of your soups.  We have had quite a severe storm hear last night.  Like a child I have lain awake in bed  excited to see the flashing orange light of the snowplow through our curtains as our street was cleared.  Having taught for over thirty years, I still get excited that the gods might have given us a "storm day".  I used to love to carry that gift of good news to the bedrooms of our sleeping kids.  They were so tickled to snuggle back under their cozy blankets and go back to sleep. I loved offering them that reprove from the drudgeries of their day.

Perhaps some winters night with the the north-east winds doing their best to batter down our door, we should gather together as a circle of friends.  I suspect we could cook and bake a wonderful feast.  And the conversation could be our dessert - food for the body and food for the soul   There is something iconic about such an image - friends bound  by difficult times gathered together - a table laden with  homemade food - an evening of conversation -  moments of silence understood and honoured and not rushed or brushed aside.  I would like that. I need that.

Though I have written very litle of late, I have read all the entries.  In particular, I have been proud of the support you have all provided Fustrated during this particularly difficult time in the life of her family.

"The souls of the dead surroud you like the sea" -  they embrace and support us.  They offer us their wisdom and compassion.  They assure us of their love and companionsjip.  They help us through.  The souls of the living do the same.  Let us do that for each other.  And let us make some thick warm soups and bake dlicious bown molasses rolls.  And let there be lots of butter on the table and big easy chairs to sit in and should the windows be frosted over with ice and snow may the warmth of our friendships keep the cold at bay.   

THat is my wish for all of you on this wntry morning - the pleasures of simple foods, the comforts of your ancestors,  the companionship of your friends and family -  may  the warmth and love of their spirits past and present surround you like the sea.

With gratitude and affection

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Reply by jorola
04 Feb 2015, 7:56 PM

Thinking of you today Jimmie and sending the biggest hug your way.
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Reply by oldbat
04 Feb 2015, 10:04 PM

More tears for and with you Jimmie, accompanied by lit candles and lots of prayers.

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Reply by AdoptedSon
04 Feb 2015, 10:50 PM

A lot of prayers, and thanks, to all you brave souls. It is comforting, and inspiring to read such comraderie among strangers, who really aren't anymore.
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