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by thinkingofdad on Fri Mar 11, 2011 06:17 PM

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Shocking are the rapid breaths forced from your weakened body
No strength to hold your head up so our eyes can meet one last time
Your skin is tinted blue - who dare allow your vessel get this shoddy
The death rattle has settled deep, now demanding all attention on it's rhyme

Nervous love abounds the air - questioning time, place and reasoning for
You hear our sobs and words, but voice your love you can no longer
Hearts sinking steadily as our tears collect as cold mercury on the floor
You must obey and leave us now for it forbids you ever get any stronger

Stabbing, hot-fire pain will see you no more - never was it welcome
Your suffering will cease; however, it takes with it your life and our hearts
It ripped you apart while in your prime, you no longer felt handsome
My hands remain steady - planning and waiting to strangle it's parts

It seized your limbs, spit in your face, stole your pride and left you fearful
We all are full of terror and sadness, your life is ending before our eyes
Your soul fights so hard to climb out of the clutches of your broken shell
It is ready now to discover the sweet secrets beheld in the land where angels fly

I can't do this... I can't watch, my mother is sobbing, her eyes are burning with grief..
God why? My pain is too immense, I cannot house it, My sister's unborn child weeps in her womb, my brothers sob... This isn't really happening...

Dad let out his last breath and the still was his body
The next journey thus began: the journey of grief



I love you dad


RE: Dad

by gigisbaby on Fri Mar 11, 2011 08:42 PM

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Ah, Tina,

I had to take a big "sigh" after reading your eloquent lament.  I have been thinking about you and your family hoping that you were doing well.....considering all things.

The vigil and the "death" watch was the hardest thing I believe I have ever done.  At the end I was matching his breathing - hoping to make it slow down and praying for his perfect peace to engulf him and us at "that" moment.

In my sane mind - I know that none of us get out of here alive - but doing it this way is truly inhumane and unusually cruel.  

The only consolation in all of this is that they are truly at perfect peace.  Those of us left behind - try to figure out how to live in an imperfect world which seemed to be OK when they were here. 

In the midst of all the madness - I can't help but look around and wonder - how did I get here?

Love, Peace, Compassion and Strength to carry on.  I am holding your hand from afar.



RE: Dad

by thinkingofdad on Sat Mar 12, 2011 05:13 PM

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Hmmm...  The "Death Watch" - that is so heiniously correct: waiting, watching, feeling sick at the sights you see, surrealism at it's most dramatic: The Death Watch. Those words are very, very real to me. With GBM this thing called the death watch goes on for weeks, and months. When you are told that there is absolutely nothing left that can assist, and your suspicions of such are put to rest, and the death watch begins.

I thing about little Alex often, Gigi... I cannot come to terms with someone so young dying like that. It takes my faith in God and hammers it flat... nothing anybody says will have an effect on that either so I'm not looking to be "reborn" in Christ. I am Catholic - I don't need that - but I feel very let down by my faith. No God would allow that to happen, it just wouldn't, no ifs and or buts in my mind. I just wish there was something I could have done to help Alex, but there isn't. Part of my grieve stems from having my hands tied, there is nothing we can do but sit and read and watch. I had to stop posting on CC because I was "feeling" too much for everyone here - sounds selfish, but true. I still go every single day and read, but if I refrain from posting I can't form that instant relationship with anymore people who are suffering, and although that sounds horrible it is what I have to do right now. I feel guilty too for not being of any help to anyone else there like luckywife just said. I feel it is my duty now to be of assistance.... I remember when I needed all that support and .... well, I feel guilty about that.

A huge part of my grief comes from watching my mother without my dad. I asked my other siblings if they feel that way and they sorta don't know, but for me... Actually, I think I know why I may be having a harder time with my mom because her and I talk about dad all the time and she cries on phone with me a lot and she doesn't do that with the others... Watching someone else you love so much grieve over someone you are grieving for too is a very hard thing. I know you get this, with your daughter... It makes your heart just burn for them because you know how they feel, but 1-step removed even... you can't imagine how they feel being as close to the person as they were.

I will stop now, but another part of my grief comes from the pain he went through. I can't shake it or the nightmares I have weekly... I won't ever forget him crying from pain.


RE: Dad

by gigisbaby on Mon Mar 14, 2011 05:09 PM

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The proverbial "Double Edged Sword"

I would not trade the time we had with Alex after hearing the diagnosis (as agonizing as it was) because we truly got to understand his magnificience.   If he had been taken swiftly - it might have spared us the vigil of the "Death Watch" - but what would we have lost in the process? We will never know - but I can imagine - all those times to say I love you, Alex - your Gigi loves you!

I would not presume to try and re-program your thinking about GOD - that is something for you to wrestle with on your own terms when you are ready.  Who knows - in time - what could occur?

I, too had to take a step back from CC - mostly because I did not want to "steal" anyone's hope away from them.  At this time - I speak only from a place of anguish and not one of false hope.  That too, might sound harsh and dispassionate - but it's where I am and I do not want to impose my particular pain on anyone else.   I do see that would be unfair and a bit hostile. 

I have no capacity to offer "hope" at this time.  Medicine, has once again failed me.   I read the posts sometime and I want to reply...but, I cry instead.

It is soooooo difficult to be another's support when your own legs are weak - I hear you.  My Holly needs me and I do not want to fail her, but you do get sooooo tired of being the stong one.

I wish I had words of wisdom - but, I flounder.

I wish I had the answers - but, I am clueless.

Have you considered therapy?  Just a person who is not emotionally involved to talk with - might help....? 

Love to you Dear Tina -my heart aches right along with you!


RE: Dad

by poinksy on Mon Mar 14, 2011 05:54 PM

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I lost my Dad 3 weeks ago. At first I was relieved as his suffering was dreadful but now, well, I want him back. My mum is like a lost sheep after 43 years of marriage, this breaks my heart. I will never forget how afraid he was to leave us and the whole dying process. I know exactly where you're coming from, your words speak for themselves. Take Care, Kim

RE: Dad

by gigisbaby on Mon Mar 14, 2011 07:27 PM

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Hi Kim,

I am so very sorry for your loss.

There are many stages of grief and we are just now beginning to explore them.  We are all in this painful thing together and I wish it were not so.

Peace and Comfort to you,


RE: Dad

by thinkingofdad on Tue Mar 15, 2011 01:24 AM

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Thank you Gigi for your words...

Tonight I went to the hospital to see my sister in labor. As I got out of my car my heart sunk and I started tearing up... the last time I was there I watched my dad in the aftermath of a huge seizure, and it was gruesome. He wasn't my dad, he was an alien of sorts. It was the night he died, but he didn't. He went into deep apnea, and his breaths were about 45 seconds apart, and he didn't wake up for 6 hours at the least. We called everyone and thought we had lost him. He went home and "lasted" another month give or take.

My mom was there at the hospital, of course, and she was wearing "dad" around her neck.... She came out of the room and said they are just putting in my sister's epideral so we walked to the waiting room. I asked her if it was as hard for her to be there, or at least when she first got there, as it was for me. She said yes, at first it was but I'll get use to it. So, I cried and balled about my dad, feeling guilty and bad for doing so, but d@mmit he would want to be here. And he can't. I'm still so d@mn mad. People say "Oh, don't be mad" or "Being mad isn't healthy" or this or that, but I am hella pissed! It isn't always at the surface, no of course not, but sometimes feeling mad is better than feeling so low, low down and sad. Ah well, I am just rambling now...

Kim, I'm so sorry you lost your dad. Yes, the lost sheep... I feel my mother is coming out of that a bit, but I do know what you mean. It will be 4 months ago on the 18th that my dad died.... I think about his death every day many times a day, and I don't know when that will stop. I hope your healing is happening for you, even though it sucks oh-so bad. There are others here, like me, who do know your pain. I'm here...


RE: Dad

by gigisbaby on Tue Mar 15, 2011 03:06 PM

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Whoa Tina,

You are brave...I don't know if I could face going back to the hospital where Alex, it seems as if nothing good happened, there.  And, since it is a Children's hospital - maybe I won't ever have to go.

Hopefully - you all have a HAPPY (Baby) memory to slip in the slide show of your life, now. 

I know people are well-meaning when they say - "Oh, but they are there with you in spirit" (and, I know that's true) but I don't care what anybody says - it's not the SAME!!!

Everything about those last days seems so etched in our minds forever - it all happened seemingly in slow motion to further torture us with it's gruesomeness.  My father passed away when I was 27 years old and that was 27 years ago - I have lived a whole other lifetime and I can still tell you things about that day.  Is the pain of it still as acute as then? Honestly, "NO" - but a dull ache resides in my heart next to the abiding love I will always carry for him.

I don't think you would be human - if some anger did not reside within you for those crushing things so out of our control.

I wish I could tell you when it was gonna get better - but, I dunno!  Time will tell...

Funny thing about time - when Alex was here...I found myself trying to slow it down - to savor the moments and now with him gone and the pain ever present - I find myself trying to speed it up... as if either of those things could really happen. 

Yeah - I would say that "this sucks" is an appropriate sentiment!

Step by shaky step - on we go.

Love Suzzanne

RE: Dad

by thinkingofdad on Tue Mar 15, 2011 06:14 PM

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It is so nice to hear from you like this Suzanne... I think about you all so often. My mother and I welcomed the new baby last night. It was a C-section after a long time of trying for the "natural" way. Baby was born around 12:30 am on the 15th. My sister's husband wore "dad" around his neck in the delivery room....  to think that is as good as it gets. It was bitter sweet. I know my sister has tried to be so strong with being pregnant and grieving and all... I feel that the post-partum may be a bit difficult for her, but I will be here for her. I understand that burning ache of anger and absolute sadness and confusion.

Perhaps my dad and Alex have now met and they can play "catch" up in the sky...  My dad loved to play catch with my boys, and my younger brother. I will tell you, if it is possible then that is exactly what they are doing.


RE: Dad

by wwjdmom on Tue Mar 15, 2011 09:05 PM

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Dear "thinking of dad" - I've been thinking about you....

One of the things I tell people is: now I know everything....I don't mean it in an obnoxious way...just that I think I have truly experienced everything have you.

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