kileys

New to group

Posted on 01/17/09, 11:16 pm

Hi there,

I hope i am in the right place. First i want to say my heart goes to those of you who have lost a child. I often describe the loss of my child as a club I don't want to belong to. But hear i am, and i thank those of you in advance who can offer me support for my problem. I lost my 4 year old son almost 6 years ago on march 16, 2003. His name was Liam and he was born with severe brain damage. He passed from complications to his condition. we cared for him at home the entire home, and he died peacefully in his sleep. I guess why i am looking for support this many years later isn't because i haven't dealt with this, because I have. I miss him horribly, but he is in a better place and able to do what his life on earth didn't allow him to do. I am joining because of the over protection my other kids have to deal with it. How do you move on and stop being paranoid something is going to happen to one of them. Today we went to the ocean and my daughter, niece, husband and son were playing near the water. My husband had dragged over large logs to try to protect their sand castles, he walked away to be with the two year old and a wave came up and pushed the log over my daughter trapping her as the water came over her. I ran in to grab her, fell myself and was completely in a panic, as well as she. Usually i know these things don't happen and my fears are irrational. I am always right there watching, she's 8 years old, but today it just terrified me. Then all the what if's start going through my head. It isn't just at the beach it's everywhere. What is she falls off the bed, what if she hits her head during gymnastics. It's crazy how far my brain can take a what if situation. I am sure all of this is exacerbated by the fact that i am pregnant with twins. I am just curious if i am the only mom who is super protective of her living children. I don't want to stifle my daughter. Thanks.

• Reply #1 01/27/09  12:02pm
  
  JenaesDad
  Hello Kileys,
  You are not alone. I understand your fear and concern for your children. Our family lost our 9 year old little girl almost 4 years ago to a brain blood vessel disorder in the brain called Cavernous Angioma. We had no clue at the time that she had this. It turns out that the illness is hereditary and through family testing found out that my youngest son who is now 6 has it, my wife, my mother-in-law, among other cousins, aunts and uncles on my wife's side of the family all have it. The illness has been misdiagnosed for the last 200 years as aneurisms or MS and nothing is known on how to treat this illness except emergency surgery if a bleed occurs. I want my youngest son to have a normal childhood as much as possible but I am careful to prevent him from high impact sports and the like. I pray and place my familyâ??s lives in God's hands everyday because that is all I can do. I try to live just one day at a time and make the best of that day. I don't want to keep my younger son from experiencing life and making the best of it on a daily basis. At the same time we take caution and use common sense. I am glad that my daughter had a normal childhood where she could run and play, do gymnastics and cheerleading. No one can tell me why the lesion in her brain started bleeding; there is not enough research on this. So it is really scary. I hope you can find a way to let your kids grow without fear that something bad is going to happen. I know based on what happened before you are being very cautious. As parents we just have to do the best that we can and pray that God will help us through the day.
  You can read more about my daughter Jenae and the illness at her website: http://jenae.gallegos.home.att.net
  
• Reply #2 01/28/09  11:15pm
  
  beauandkels...
  you are not alone on this when my 8 month old died it put me into premature labor with my son they gave me breathine to stop my labor which made his brain not form correctly when we found out he had problems i pulled away from him and i do with my other 2 kids alot it is alot of being overprtectie but it is also the fear of the unknown because after you lose a child its always in your mind that you can lose another one just as quick as far as you caring for your child at home i commend you on that cause i know how draining and how emotional it can be we cared for our daughter from december94 till april 95 when she died at home and we cared for our son from time he was born until he went home at 10 days from being 6 i would love to talk to you some more seems like we have been through alot of the same about the brain trauma and all mine had a heartatache but it was caused by him having to have a shunt in his brain and it ran to his heart and fluid collected and it couldnt beat any more did not have any room

This is for mothers, fathers, or grandparents who have lost a child or grandchild. Experiencing that loss is the hardest thing ever in life, but with every ones support we can pull each other together when we get weak and be there to guide each other to carry on in our lives.