What The Heck!1

I want to know if there is any one else out there that really gets pissed off when people start to tell their stories about how they had a loved one pass or whatever...... I have a 5 year old and he has a pontine glioma and his expectancy is less than 1 year. How as a parent do you tell people to back off??

I think you are being quite selfish. People may be just trying to reach out to you and let you know they know it feels to suffer, and they too lost someone or are losing the battle with a disease and that they are there for you if you need someone to talk to. They are likely not telling you there story to look for sympathy or to make you feel bad for them or to make your life seem trivial. I understand a five year old  fighting that cancer is completely unfair and tragic. You however are not the only person who has pain in their life.

I wont tell you what brought me to this board because it appears that you dont care, I will however tell you I'm sorry you son or daughter is suffering I truely believe they do not deserve that they are dealing with and I pray they will get better.

I am so sorry for what your child is going through. And as a mother of 4,  I cannot  imaginge what you and your family  must be going through. I would suggest that you get into a support group in your community and meet parents that have experienced what you are going through. I'm sure you must be full of anger at times which I can totally understand. I'm sure people are only trying to comfort you and maybe you are just taking it the wrong way. Just focus on your little angel and be with him and let him know how much he is loved. God Bless  you and your family and especially your little one....Trudi

It is human nature to share our stories and experiences with one another.

Sometimes it is helpful and comforting, and sometimes it is NOT what we need.

This is the human experience. Not a perfect world unfortunately.

I am devastated to hear of your child's ilness, and I pray for you to have a miracle.

God Bless you now, and in the days ahead.

 

Beth

I don't mean to sound like i am ungreatful, however watching a child go through something like this is unbearable. I realize that all the people on this website have had or are expperiencing some sort of tragedy, what i have the problem with is the ones who know someone who knows someone who lost their first cousin from a car accident. I can appreciate the loss but the sight of watching somene fight a fight that they can't win really sucks! watching my child unable to have a bowel movement for 3 weeks then scream in pain when he finally goes, or dragging him everyday for radiation and moving him to be closer to treatment is hard. i am not dismissing the tragedies of others, however, i would prefer to hear form the ones that have honestly fought this fight.  I am sorry for offending you, and would like to hear how you are at this sight.

Hi,

I came across this website today and I thought about you. Hopefully you can find parents that can help you through this.You are in my prayers, keep the faith and take care of yourself....Trudi 

http://pages.prodigy.net/replyasap/children/

 

On 5/3/2007 Sebastians Prayer wrote:

I don't mean to sound like i am ungreatful, however watching a child go through something like this is unbearable. I realize that all the people on this website have had or are expperiencing some sort of tragedy, what i have the problem with is the ones who know someone who knows someone who lost their first cousin from a car accident. I can appreciate the loss but the sight of watching somene fight a fight that they can't win really sucks! watching my child unable to have a bowel movement for 3 weeks then scream in pain when he finally goes, or dragging him everyday for radiation and moving him to be closer to treatment is hard. i am not dismissing the tragedies of others, however, i would prefer to hear form the ones that have honestly fought this fight.  I am sorry for offending you, and would like to hear how you are at this sight.

 

I am sorry for the pain and frustration you are going through.

  Cancer is a beast and it has no feelings and does not care who you are or how old you are.  It does not know the words fair, unfair, love, family, depression, life, or death. 

However, my friend, there are many who experience all of the above and have much sympathy and share your frustrations.

 Peace be to your child and you and your family 

 

 

On 5/1/2007 Sebastians Prayer wrote:

I want to know if there is any one else out there that really gets pissed off when people start to tell their stories about how they had a loved one pass or whatever...... I have a 5 year old and he has a pontine glioma and his expectancy is less than 1 year. How as a parent do you tell people to back off??

 

I know you are angry at what is going on. Its okay to be angry. We are all human beings and humans have different views and emotions. I have lost two of my children, one car accident, and the other illness. I know how angry you are, believe me. Just take care of your little one as long as you can and dont be concerned about what others think, There are some family members of mine that dont have feelings at all unless it falls on their plate.

 

On 5/1/2007 Sebastians Prayer wrote:

I want to know if there is any one else out there that really gets pissed off when people start to tell their stories about how they had a loved one pass or whatever...... I have a 5 year old and he has a pontine glioma and his expectancy is less than 1 year. How as a parent do you tell people to back off??

 

First of all, my prayers are with you, your child and your family.

 I think that most people tell their stories with the intent to comfort another person and sometimes do not realize it was harmful.  Don't turn anyone away in your time of need and try not to be so angry.  For each day your child is with you, is another day of love you can give and another day of love you can receive.  Acceptance of any circumstance good or bad, is the one area in our human lives we must pay attention to.  Other people's stories are real just as yours is right now.  If you really don't want to hear them, then just be honest enough to ask them not to share the story with you.  Let people know that this is not the time or place in your life to deal with or listen to someone elses story.  Down the road you may better be able to listen or even offer your own story.  For the most part, you are on a websight of sincere stories, of people looking for hope and people looking for a good ear to listen to their story and searching for help within their own story.  So try not to be so harsh.

God Bless You