I Hate Dialysis Message Board
Introduction => The IHD Family - Our Members => Topic started by: glitter on July 07, 2011, 11:29:33 PM
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My daughter was only 21. She was a child with disabilities, she also had epilepsy. She was doing so very well, had an eeg that morning- went to bed that night and in the night had a seizure which obstructed her airway and died. She only had 1 or 2 a year, and never at night in her sleep that we know of. I am in the freshest hell. We four have now shrank to two. Today I went to arrange her funeral which is sunday, but the drs are arguing over who has to sign the death certificate. She passed at home, and had just turned 21, hadn't met all her new Drs, and had been signed off by the pediatric ones. So far her peditrition of 10 years called me today and said he wasn't a neuro and he would not sign without an autopsy. I do not need this p*cking arguement about my child!
the ME signed off on the investigation, why cant someone just sign it?
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Glitter I am so sorry.
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OH!DEAR GOD! I am so very sorry! Words fail me and I will be thinking of you all night long Is there anything at all we can do for you?
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So sorry to hear Glitter and on top of that the troubles, well shit that your put through before her funeral.
I hope this gets worked out in plenty of time. :cuddle;
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Dear glitter, this is such a shock, and I am just heartbroken for you.
I am so very sorry dear friend.
:'( :'( :'( :'( :'(
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Glitter, I am so sorry!!!! My first born son died of the very same thing when he was only 14. It is a terrible loss and a terrible disease. My heart just is breaking for you. I hope at least you can get the necessary paper crap out of the way so you can bury your child in peace. I will pray for you and for peace for you too. Hugs, Hugs, Hugs.
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:'( Glitter I am so sorry about this VERY sad news.
You have had so much sadness and now this..
Please know I am thinking of you and your family in this difficult time.
God bless you.
Lots of love.
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I know there's nothing really I can write right now that will or ever could help.. but I am distressed to read this sad news. I am so sorry and all my hugs go to you at this so very sad and difficult time. :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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Glitter, I am so sorry to hear about the loss of your daughter
and it is terrible the bureaucracy that can go on
at times of great sadness.
I do wish you lots of strengths,
kind regards from Kristina. :grouphug;
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Oh Glitter...
I'm terribly sorry to hear your news...
I'm thinking of, and praying for you....
May your daughter rest in peace...
Please keep in touch... We're always here for you....
May God bless and protect you and the family as you grieve...
Love, and hugs....
Darth.....
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Glitter, there simply are no words that I can find that would help in any way but please know that I am thinking of you and desperately wish that that this had not happened. You have been through far too much in far too short a time.
:grouphug; :cuddle; :grouphug; :cuddle; :grouphug; :cuddle; :grouphug; :cuddle; :grouphug; :cuddle;
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God bless you and your family during your time of sadness. There is nothing I can say to make things better, but know there is love outpouring for you all. :grouphug; :grouphug;
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Glitter I am sooooooo sorry :grouphug; :grouphug;
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:grouphug; I am so sorry for your loss.
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glitter, I'm so sorry. I've been where you are and there aren't any words. :grouphug; :grouphug; :grouphug;
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glitter, there is nothing I can say to ease your heart. To lose a child must be devastating. My prayers are with you and your family at this time. I feel for you all.
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Glitter, I am so sorry to hear of your loss. Just know that your IHD family is holding your hand as you go through this :grouphug; My prayer is that the redtape be cut short and that you get to go on in peace. Please keep us updated as you are able to. Lots of love is directed to you right now :cuddle;
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Oh, glitter, honey, there just aren't enough words.... :grouphug;
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:'( So sorry Glitter. My condolences about your daughtr and sorry you have to have such additional problems. I hope all is cleared up soon. :grouphug; :grouphug;
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I am so very very sorry for your loss..... :grouphug; :grouphug; :grouphug;
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Oh dear, please feel the ((((((((hugs))))) from everyone here. Can only imagine what you're feeling, and you may even be numb. My heart sank when I read this. In this your very trying time, I think it's safe to say that everyone is here to hold you up when you need it. What ever you are going through we will understand. It's great to have each other here because life is not always so easy. TS
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:grouphug; Im sorry to hear of ur loss
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Oh Glitter, my heart goes out to you. Nothing is harder than losing a child. Please know you are and will be in my thoughts and prayers. :grouphug;
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Oh, glitter, sweetie, I am so very sorry. :'(
:grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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Bless your heart and may God bring you peace. Im so sorry glitter.. :grouphug;
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such a young and beautiful life, full of promise...cut so so short. Glitter I am so so sorry. :'(
xo,
R
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Glitter I am so sorry for your loss. :grouphug;
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Oh, dear, Glitter. This must be devastating. I am so sorry and words fail me. But please know that my hugs are added to all those of the rest of your family here. :grouphug; :grouphug; :grouphug;
:(
Aleta
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Glitter, my sincere condolences.
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OMG! I cannot believe this. I'm so very sorry. How can we help? I wish I could give you a hug in person, but here is one :grouphug;
Please be well. I'm so sorry for your loss. Children aren't supposed to go first!
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Its very sad news Glitter. Thinking of you and your family in mourning. I wish it wasn't so.
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I am so sorry for your loss Glitter! Please accept our deepest condolences. There are not any words that can make things better! Just hope the dr's clear up this matter sooner rather than later. My thoughts and prayers are with you and your family during this difficult time! May God Bless you all!!
~~G~~
:grouphug; :grouphug; :grouphug; :grouphug; :pray; :pray; :pray; :pray;
EDITED: Fixed font size. Shrinky, one of the site rules, which I quoted below, is that we use the standard fonts and colors for the majority of our posts. It's easier for our members with vision problems if the sizes and colors are consistent. We all bold and color things occasionally, but the entire post in a larger font makes it harder for some members to use their accessibility programs. Thanks for helping! - jbeany, Moderator
"Please refrain from making your posts in a different colors or using a lot of colors in your posts. Just stick with the default size, color, and font. You may use colors sparingly to add emphasis to certain words, just keep it simple or you will be asked to change it. You are allowed to use bold, italic, etc, etc. however do not get carried away."
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So sorry to hear of your loss. :cuddle; :cuddle; :grouphug; :grouphug; :grouphug;
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so young, such a tragedy :(
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wow Im sooo sorry to hear this. My heart grieves with you.
:grouphug;
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Glitter please accept my deepest sympathy. I don't know what to say in consolation except that I have lost my only child in the past so I do have some idea the grief and agony you must be feelin right now. If you need to talk about it sometime to someone knows too well what it's like then you are welcome to PM me anytime.
:grouphug;
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Glitter, I have absolutely no understanding of how completely heart-wrenching and awful this is for you. I am so SO sorry. I know a virtual hug isn't quite the same as a real one, but it's all I have to offer you at the moment ...
*huggles*
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Glitter, I am so sorry :cuddle;
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I am sending the most heartfelt condolences to you Glitter. This has been such a rough last couple of years for you. If there is anything I can do to help ease the pain please let me know.
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So sorry to hear this tragic loss! God only knows how hard it has been for you! Please let us know if we can do anything!
Praying for you during this time, that you find peace in your time of sorrow! Times like these are SO DIFFICULT to understand,
lmunchkin :flower;
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She was such a good girl. Jamie was developmentally delayed- just enough to make her happy and child-like and wonderful. I am in awe at how many people in my community loved her- there were numerous teachers at her Celebration of Life, and the plants keep coming. Today one came from the Principle of her school- he knew Jamie a little bit only. Jamie was always thrilled when she would interact with him, she really liked him, and was impressed by him. She would be stoked he sent something!!
I have gone back to work, its very hard to get through the day- but I need to work. I am moving to live with my Dad. My other child, Jackie and I think its a good idea.
I never considered that my child could die. I protected her every minute of the day, as well as I was able. For death to creep into my home and steal her from me. It sucks.
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I know when I lost a brother in 1983, he was tragically killed crossing the street in Longview, TX., and was the first of my siblings to pass, it devastated my Mom & Dad. They were never the same afterwards, but they had 7 others to look after! I think that helped tremendously !
The hardest thing about death is the unexpected one's! One day they are here amoung us, laughing and carrying on and then fate takes them suddenly. It's so terribly Sad!Like you Glitter, my father handled everything for my brother. He had to fly to Texas (we resided in TN. at the time) to ID the body, we stayed at home with Mom. He insisted she stay, and Iam so glad he did cause it was not pleasant to see and she would not have handled it very well.
His body was unrecognizable and the service was a closed casket because of it! After all had settled somewhat, Dad told us all what had happened that fateful evening. He spoke to Longview police and they told him that he and some friends had been playing pool at a bar and left as it was getting dark and they crossed the street to head home. Brother was last one to cross and his friends who were with him said he pushed a young girl who was pregnant in the ditch and he took the Hit. The guy told Dad that he knew it was fixing to happen, so he pushed his wife into the ditch and saved not only her life but the life inside her! Later, we found out that the baby they had was a boy and they named him after my brother! We were so happy to hear that cause even though his life was over, another one was born and named after him to honor his memory! What a wonderful thing these strangers did for our brother!
Im sure your daughter will be missed tremendously, but hold on to those good times and the memories of her! She was very special to you, and you will see her again! Time will make it better for you, Glitter, but it does take time! Just remember and cheerish the memory of her! I know this is easier said than done, but work can be helpful in these times!
Please take care of yourself and keep us posted on your living with your Dad. Im sure Jackie is concerned for you as well!
God Bless You, Glitter, and give you peace during this time,
lmunchkin :flower;
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I never considered that my child could die. I protected her every minute of the day, as well as I was able. For death to creep into my home and steal her from me. It sucks.
This has been my worse fear since Jenna was first diagnosed. Always lurking in the back of my mind.
How are you doing glitter? :cuddle;
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Glitter, My heart goes out to you, it is nice to know that you are OK and muddling through, work will help a little. May be moving in with your dad will help a bit as well. Thinking of you.
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You know- its weird- I have repressed my grief. This is so gut-wrenchingly horrible- I can not process it, I walk around screaming inside my head. I can barely talk about it. Jackie, her sister, and my dad are the same way. We seem to be fine- but we cant deal with this level of pain, so when it starts to come out we just shut it down. I know this is probably not good- but its all I can deal with right now. There is a name for what killed my daughter SUDEP- Sudden Unexplained Death in Epileptic Patients. I had not heard of it- it is rare and mostly affects people with a heck of a bunch more seizures then my Jamies one or two a year. The cure- supervision......a simple monitor. They do not monitor people electronically who only have a few a year. If I would have known she would have been sleeping in my bed with me- shoulda coulda woulda. Its F**ked up. The horror of finding her....the horror of the investigation- (She died at home, so brief investigation)I pray none of you go through this. I had a heart attack when my husband passed away, so now my daughter is so worried I will leave her too. Me too, I don't want to leave her all alone. Its Scary.
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Most of us on Planet Earth would be spared a lot of suffering if we could be omniscient. But none of us are, and that's why so many of us suffer with regret and guilt. I hope you don't take on this extra burden. It would be vastly unfair to yourself. What happened to your Jamie was against the odds.
It sounds like the grief you experienced when your husband passed away really did break your heart, and I am very concerned that history may repeat itself. It is good that you see that locking away your grief is unhealthy for you. It may be just the way you are wired, but that doesn't mean it is the healthiest way for you to cope with the horror that has rocked your world. I truly do not know what could possibly make you feel better right now, but I would urge you to seek professional help to assist you in finding a coping mechanism that works for you. There is nothing that anyone can SAY that will reduce your grief, but maybe someone can help you COPE with the grief in a healthier way.
My heart goes out to you and to your Jackie. If there is anything at all that we can do to help you, please do let us know. My own heart hurts so much for you. I am so very, very sorry. What horror, what horror.
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:'( :'( :'( Awwww glitter, so much sadness.
Please keep coming back here and let us love you. :cuddle; :cuddle; :cuddle;
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Glitter, you really do need to talk to some one, you can not keep all that grief in, it will burn you out. Can you not get in touch with a grief counselor, you really need to do this, especially for your daughter she is here and she needs you. I am thinking of you both at this time. Be gentle on your self. get some help.
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Oh, glitter, your grief comes through so clearly in your posts. No one should have to suffer as you have and are. I don't want to overwhelm you with advice and speeches, but please do consider reaching out to others. In Milwaukee we have a highly recommended charity for kids (and their families) who are losing or have already lost one parent. There should also be support groups for parents who have lost a child. Counselors have their place, but I think forming friendships with people who have already walked this path will be the fastest route to starting the healing. Grieving is work, arduous and seemingly endless. Let people share their strategies with you, and as time goes on, bring the joy of new relationships into your life. When you're ready, or maybe even a bit before, please consider contacting help organizations.
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Glitter, I just Read this. I am so Sorry.
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I agree with Cariad! I believe that just coming to IHD has helped you to open up a little! Letting this out is probably the best therapy possible! We may not have the answers you seek, but we do have a safe place for you to express your feeling! We are all so very sorry for what you are going through! It can't be easy! But Glitter, know that we all love and care for you and we always have the ears to listen!
Keeping you & Jamie in our thoughts & prayers,
lmunchkin :flower;
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Thinking of you, Glitter, and sending you strength and courage. My heart goes out to you and your family :grouphug;
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OH!DEAR GOD! I am so very sorry! Words fail me and I will be thinking of you all night long Is there anything at all we can do for you?
I am so sorry to hear of your tragic loss. Please know I am thinking of you and praying for all.