Waiting for the dark

I have been fighting 4 years when I was only given 6 months, it is hard for me to type this because it makes it more real somehow. I am only 33 years old, I have three small children. I have asked why me, I have cursed and blamed God, and I have almost given up the fight. The medications that are keeping me alive are killing me, a slower more painful death but I have sired a new child in the time I would not have had, but I will orphan him before he can even remember I was there at all.

I have been fighting Epilepsy after a head injury and corresponding stroke changed my entire physiology. Resting heart rate went from a steady 60 B.P.M. to a dangerous 120 that spikes over 250 during a seizure. I have "died" half a dozen times as a result to be resuscitated by my wife, my neighbor and the EMTs. There have been times that I have considered a D.N.R. but as I look on the pages of that form the faces of my children come to mind and I crave every last minute.

I don't really sleep anymore afraid I may miss something or worse never wake up again and now I have a new problem, renal failure. The drugs have destroyed my organs, I have a heart that won't slow down a liver that is filling with iron and only half a kidney.

Each time I wake up on the floor I see the fear on those 3 tiny faces, each time my 4 year old tells me "daddy you had a seizure" its not my life I am mourning its theirs I will not be here for first dates or graduations, someone else will be walking my beautiful daughter down the isle, I will not be here to play catch with my sons or teach them to drive. Then again maybe I am mourning for myself, my heart torn out by what I will miss.

I sit and wait taking more and more medications, ineligible for transplant, waiting for death to come for me. I sit screaming into the dark and hear only echos. How do you explain to an 8 year old and a 4 year old that daddy is dying? will my youngest ever really know how much I love him, how hard I fight for just one more day? Will I see the new day dawn?

It feels like God has abandoned me, and that modern medicine has failed me, And some days I wish I had never been born.

The real question is should I give up, swallow a bottle of the many life ending drugs I have to spare my family the torture of watching my last weeks on earth. Why not? I'm going soon enough anyways. Quick and painless just fall asleep, forever. Wrap myself in the cool blanket of oblivion. Could anyone blame me? I have fought a long time with no hope, am I not allowed to finally break under all this weight? Sometimes It takes everything I have to get out of bed and wheel myself out into the light of day, every shred of will I have to talk myself out of it. Maybe I should just let go. Hell or perdition can't be any worse than this. Can it?

silence

although this is an awful thing to have look at all the things u are gaining by hanging on and who knows what u will live to see or not

yes tell the kids that u wont always be around but do it naturally and keep it all light and enjoy those moments that are yours to store and cherish now not in some murky future

and yes i think if u have to ask it can be worse do u really not want to see those faces as long as u can

i appreciate its hard to make the effort but think how thankful those babies will be when they have a store of memories of how u fought to stay with them that u never gave up dispite it all and hung on for them

i do feel for you my friend but i know u are strong enough to build those memories as long as u can

be kind to u

love D

Silence,

I am so sad and sorry for you - this is sad news to have to live through.
I am so so sorry. ((((HUGS))) I wish I could hug you in person!

You are a brave soul, and you are extremely special for writing and thinking things through. Even if they are sad. At least you are trying to deal with this as best as you can.

We are here to help you make these last months GOOD months and not sad or bad months. You want to live your last months in a good way don't you? Don't live them in a sad way. Show your kids how much you love them and how you want to be in their lives forever!!

Do you have a video camera? You can make videos for them. For each milestone in their lives. Talk to them about it. So when they do live through these milestones, they can watch your dvd and you WILL be their for them. They WILL know you!

Are you religious? Please turn to The Lord, He is always there for you. You can pray - I will pray for you, I am Catholic. (((hugs)))

Speak with a smile - you made the first step to a happy ending to your life, you are reaching out for help, comforting, love. Please know that I hope you continue to check in. I would love to stay in touch with you!

God be with you and bless you,
Ave Maria!
jeanna

what a fantastic idea to use a camera and be there for them when they need u

i hope u are having a good day silence

love D

How are you doing tonight, Silence? I have been thinking about you and keeping you in my prayers.

Your kids and family sure are lucky, ya know that? You are amazing! Going through what you are going through and you think of them and their feelings so honestly and supportively.

You are such a gem! God be with you and bless you, Silence

Check in when you feel up to it, ok? ((((hugs))))
Jeanna

Thank you Jeanna for your thoughts and prayers. Was back in the hospital again last night, had what I thought was a cold, turns out its pneumonia. My immune system is not doing mush with all the medicines I am on and the damage to my organs, so I have to go in every 6 hours for I V therapy. Sometimes I gotta laugh at all this crap to keep from falling apart. I like the video camera idea, I don't have one but I should be able to borrow one.

In the meantime I will continue to hold on even if it is by a thread.

I wish you the best. Ben

I am so glad you checked in. Hope you are showing improvement healing from pneumonia. I am so sorry you have so much suffering. So sorry.

Are the IV's helping you? How are your spirits been? That is nice you liked the video idea. I am glad :) It may help you stay focused on your legacy. Your children will treasure videos from you.

You keep resting for now until you get through this pneumonia, I am keeping you in my prayers, Ben. God be with you and bless you!

((((HUGS))))
Jeanna

dear Silence, write a journal and story of your life for your children, tell them of your experience , stength and hope for the days you cannot be there to inspire them in person. we should all do this for our kids, but you are compelled to do it now, not later, do not be anxious or despair for the Father in heaven knows what is going on and he will protect your children. but do leave them whatever legacy you can in writing, you are a good writer . you can write a simple story for now for the little ones and a more complex story for later when they are older. tell them how you are coping and how you are facing your death. they will love you for it.

all my best with hope this ispires you and faith in Our God who is great and can set righ all things and with loving kindness, a prayer warrior praying for you.

Hi there Ben!

Just checking in on you. How is the pneumonia? Hoping you are feeling better and not back in the hospital. ;(
I worry about you!!

Still praying for you and your family as well. May you always find comfort in them and they in you.

Great idea to journal for your kids as well. You have so much to do!! :-))

Be inspired by your life! You obviously have a lead a good one, it shows. Your children are very lucky to have such a caring and thoughtful father.

Ok, you check in when you feel up to it. "you da man" as the saying goes!! lol

Hoping and praying this note finds you feeling better.

take care, God be with you and bless you
(((BIG hugs)))
jeanna

Hello been in the hospital a while now, doctor doing blood tests twice a day. whispered conversations with my wife, worried look in her eyes. She is so strong I wish I had her strength, no matter hell or high water she is there to hold my hand. What a cruel joke. seems each day I get weaker and she gets stronger, you can't tell her that what she is doing is anything other than what anyone would do. been trying to write down some of my thoughts, when I can think through all the meds, but it seems so pathetic. Tiny little words, as if they would ever be enough, trying to explain who I am and what path I followed. Trying to tell my kids how much I love them. Such a cruel twist in life when they are so small.

Hi Ben!

So are you still in the hospital or home now? Sorry for more hospital staying but if its what keeps you from feeling rotten, then thats what should be.

When I read what you wrote about your wife, I was thinking the same things bout YOU! Seriously! I mean, think about it. Here you are, knowing the end of your life is near and you have the strength to think about your kids, wife, family and on top of it log into this site and talk about it all and ask for advice. You are amazing! Thinking of others and how to be there for them as long as possible.

Ben, all I can say is you are an amazing sign of strength to me! I haven't heard you complain about anything! Who wouldn't have a sly comment about the cards you were dealt. But you could be home, sulking, complaining, angry, spreading misery. You seem to be doing the opposite if you ask me!!

I think of me and how I sit and sulk because of my condition. I get angry, sad, I live in misery some days just because of my cards! You are an example to me, on what it appears like to show the strength of many, from one soul.

You are a change in others. If that makes sense.

I want to Thank you and I am truely Blessed to meet you!! Thank you, Thank you!!!!!

Not sure if you are religious, but I honestly believe that The Lord has a reason for everything and our story is written before we are even here!

You are making an impact in the lives of your kids, you may not realize it but I am sure you are.

I hope you feel better and can be home and all comfortable. Then you will be able to journal and feel good about it. Sometimes its hard to write when we don't feel well. Its when we find that little bit of strength from the good feelings inside us that we are able to express ourselves the best.

Now don't forget to journal with a video tape or two!! Your kids will absolutely love it and treasure it beyond words.

Wish i were there to help!! I have a camera.
You just take care for now and heal that pneumonia before it gets worse.

Lots of ((((hugs)))) and lots of prayers sent your way my friend!
Ave Maria!
Take care,
Jeanna

I agree, it's heartrending that you have to face something like this head on. I agree with the ideas being given for your children. A video camera, a voice recorder and journal's would be a way to leave something behind for them to always have to hold onto. You could write them each letters to be given on specific birthdays or other specific occasions.

Many hugs, take heart and I pray you heal and find the peace you seek. Sending positive energy and thoughts your way. Every memory you make is worth it, I can say from experience that someone that meant the world to me when I was just a child gave me some good memories and when he died when I was nine, I still had those memories.

dear Ben, you were in my thoughts and prayers for your continued strength and well being you and your family this morning on my prayer walk. but i forgot gratitude until i read your last post, and somehow you reminded me of gratitude. thank you for your inspiration, for your fight for your life in this life.

all my best to you in faith in a life hereafter for you and your loved ones and hope you will come to enjoy the thought of it with your family and loving kindness in the mix, a prayer warrior praying for you

Hey there Ben!! Where have you Been? hahaha I had to say that! Don't mean to make light of your situation, just bring a chuckle to your day....if it did...hope it made you at least smile, my friend! :-D

I am thinking about you, hoping you are feeling up to checking in. Are you able to go home from the hospital?

I am keeping you in my many prayers - I always think of you. Ben, you are a gem for loving your family so much and thinking of their future. Just a GEM!! Meaning you are so very special and I am honored to have met you! I really am!

I miss knowing how you are hanging in there. I just want to take all your suffering for you. You have been through so much.

Hang in there!! Don't give up, love always! You are sharing more than you know. Miss hearing from you - hope you find the strength to check in. Of course if there isn't other priorities. Please choose your loved ones first!!

Take care, God be with you and bless you!
love n hugs
Jeanna

Finally home lost the use of my right ear to an infection my body is too weak to fight off, they say it could be fixed with surgery but I;m not strong enough for it right now. Seems funny to me how fast a cold in June can take me so far down, then again with my organs in the shape they are I guess I shouldn't be surprised. I sleep 16 hours a day and still have no energy, its a fight to get out of bed each day but I'll be damned if I am going to lay there and miss the few hours I get with my family.

Its a funny feeling I have these days, as I feel this shell dying around me it brings a strange feeling of comfort. I no longer fear the end but almost embrace it, not that I will give up the fight, far to much to lose.

Though I walk through the valley of the shadow of death I shall fear no evil for though art with me. strange words that a few years ago held no meaning for me, I think I understand now. Death is not truly the end of who I am, heaven or hell are not what I thought they were, because I am in both right now. I am blessed to have the family I do, and cursed to have to leave them.

I gave up asking for a miracle long ago, Now I only ask for the strength to die well and show my family how much I tried to stay, just for them.

(((((((((((((((((((((((((((((((((((((((((BIG HUGS)))))))))))))))))))))))))))))))))))))))))))))))

You are amazing! I will pray for that for you as well. God be with you and bless you and your family.

Silence:

I cannot say I understand how you feel, but I can sympathize with you. My oldest sister needs a heart and lung transplant. She, too is ineligible for organ donations. She has out lived the time that the doctors said she would demise. It is hard for us both. Neither one of us do death well, but I'm supporting her until that last breathe.

It is hard for she has a three grown children: oldest daughter has issue with drugs and alcohol, and six children, who also are having children; her oldest son has sewn seven kids, is not stable in the workplace, irresponsible--period; her youngest son is in prison, constantly wanting mom to send him money, has been in prison 17 years for his first offense.

She has good days and she has bad days. Look at it this way. IT IS EASIER TO DIE THAN IT IS TO LIVE. You must think of your children and wife. Ensure they are financially prepared for when you depart this world. Tell them daddy will one day fly away to Heaven to live with God, that is if you are a praying man and have a belief. You would be really surprise what young children can sense. They are very smart these days, and you must remember the innocent can perceive a lot more than you think.

Stop beating up on yourself. Think about what you can do to make your family life joyful for the time you do have left. I pray for the world daily, and myself because I have health issues. So, just for today, I plead the blood of Jesus Christ over you and your family. I pray that He will give you strength, and I will thank Him for what role you have had in His Kingdom. He will call you when He is ready, not a moment to soon, unless you allow the Evil One to cheat you out of your time. God Bless!

SD

dear SD well said to Silence, hope this made sense to you and hope that you being surrounded by a loving family makes sense to you at this time. you are blessed to have a wonderful family and this says to me that you must be a very special man clearly with very special strengths of your own that your family value. i think perhaps you do not see them but the man is the leader of the family and truely you are leading your family to a position of strength when you are gone. God bless you all and be with you and continue to uphold you when you cannot hold yourself.

all my best with faith and hope and loving kindness, your prayer warrior

How do you want your children to remember you? as a fighter or a quitter? I am praying for you, hang on one more day only one more

do you remember that movie from the '70's Sunshine? where the woman was dying and made tapes for her child to listen to when he got older?maybe you could do a video for your boys, give them your life story , let them know how much you want to be there for them you could even slip in some faterly advice for your daughter on dating