hi i was wodering if anyone can help me with end stage bilary atresia,my daughter is 30 and untransplanted.and is loosing her battle now,she now has brain damage after a coma 18mnths ago had 3 bleeds has fluid build up.sometimes the suffering is so hard on us its unbearable.how do u get through this,grateful for any advice just lost
My heart goes out to all of you. I know what you are feeling, I lost my son after horrendous suffering at the age of 31. If you are a spiritual person then trust that your daughter will no longer be suffering. This has been what I have heard for many years but to be honest....nothing helps. We almost lost our son several times and I thought I was prepared but nothing can prepare you for the loss of your child. It's very hard, but you have to go on for yourself and family who all love and need you. I can say that it does get easier with time, not sure how, just that it does. Take the time to mourn your loss, and write about your daughter. This is very therapeutic for us as it serves as a form of release. It can be anything you want to write..but write and write some more. A grief counselor can help as well. I found that it was something I just had to deal with on my own as there were no words to ease my pain. The day will come when you will think of her and smile...other days you will think of her and cry. Let this pull your family closer and know that she would want you to be happy. If you ever want to talk or vent you can private message me. This is not the time to pretend to be strong, be patient with yourself. Talk to your daughter, hold her hand and hug her. Big hugs to all of you....I know your hearts are breaking.
I thank you so much for your reply,there are days when i just feel like my own soul is hurting so badly,i just feel numb and other than making sure she is comfortable i have trouble completing a simple task i feel terrible fear and helplessness,i am sure you would know exactly how this tragic journey is.I have found myself just shutting the world out and trying to be so strong,but live every waking moment in fear and the horrible wait of watching her body struggle everyday.I know when her suffering is over she will be in a better place,how did you get through watching your child suffer and how did you cope on the daily basis
Its just so sad and overwhelming,I commend your bravery for giving such an incredible gift of your time to help those who are hurting and trying to make sense of the grief that takes our lives hostage.
I truly understand, I lived with a lot of anger and bitterness over losing my son and I too, shut out the world. But there were times I wanted to scream to the world...I JUST LOST MY SON!!! I would cry at anything, and when we lost him I just wanted to go with him....our children should never leave this world without us. When we lost our son he had two little boys 6 & 9. We wanted to do everything possible to keep them going, and often we would just cry together. One year after losing their dad, my oldest grandson was diagnosed with the same disease at the age of 10. By the time he was 16 he had endured 38 surgeries and after that a 5 organ transplant. He was re-living all he watched his dad go through, and at the age of 18...we lost him as well. At this point I just wanted to die...again! He had no childhood and was such a good kid. This pretty much pushed me on over the edge. I realized that I had 2 other grandsons, my own two adult children and a husband of which none could have endured any more losses. This is what brought me here...I felt I had to do something positive so that my son and grandson's passings were not in vain. By helping others I help myself. Not a day goes by that I don't cry for both of them and I feel like a mere shell of my former self. So much of me went with them. Their ashes sit side-by-side in my daughter-in-law's home and I can't bear to even look in that direction. Being there for my family is what has kept me going. I wish I had some magic words to help you through this, but there are none. I had to go on medication (still on it) and I feel it has saved my life. You may want to consider this...at least for awhile, because the pain is immense and some things are just too big for us to handle on our own. Losing a child is a million times worse than we could ever imagine. Do what it takes to remember your daughter...for me it was a story I wrote to him and framed. Below it was a planter with artificial ivy and an angel sitting on it. I hung everything that represented who he was...a little baseball bat, football, etc. It somehow gave me comfort. You have to go through the grief, pain,anger, questions....everything. But you won't walk alone...at night go out and look up and find the brightest star and know that it's her smiling down on you. I wish all of you peace in your hearts....and I hope it helps to know that others have been where you are and truly care, and we all walk that path with you every day. God Bless all of you....
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