I'm never up at this hour, but we are no longer sleeping. Danny and I have spent hours on the phone with family, and in between we have been reading your post of support. My husband can not believe the support and prayers from "strangers on the web", I told him, none of us are strangers, we are all bonded. We have not got support from our entire family, some believe we should try "anything", regardless of the pain it will cause Josie, even though we have explained that nothing will save her at this point. But now Danny and I are awake, wondering, how could we not have known. What kind of parents are we?? Our baby has had this since birth, and we never saw a problem...I mean if she had not stopped eating, we would have never known. We have held her for hours, a perfect little girl, nothing looks wrong, she is a little gift from god. But how, and why could this happen. Yes, I know i'm ranting...I can not rant anymore with Danny, he is as lost as I am. I just need to say these things to someone...and I know that you are all always here. My family will start arriving on wed. 5 sisters are on the way, 3 brothers and their spouses, 3 sisters can not come due to family (big catholic family). Danny's family is all here (we live on the same property as his 3 brothers, sister, mother, 2 nephews). So we will have family everywhere. As most of you know, I work for hospice, so my co-workers will be here to hold our hands, and do the job they have been blessed to do. Thank you for letting me ramble on...and thank you for the prayers.

Dont beat yourself up over what coulda shoulda woulda. If for any moment you thought your baby was in danger you would have sprang into action.

In 1991, the same day Bush Sr. gave us shock and awe in the first Iraq war. Our oldest son got a piece of meat lodged in his throat. It nearly killed him, but it wasnt what was really wrong. He had esophageal cancer, and he couldnt even get a drop of water down.

As he was growing up he did a very gross thing that we tried and tried to discourage, but he would just hide his ability to swallow his food then bring it up later to chew. Well from those years of all that is what caused the cancer. Not only that but he had lost a lot of weight, but we thought it was from him walking 20 or more miles a day in 100 degree heat.

We tried to get him to take the bus, but he loved to walk and talk. You see he is a bit challenged. About 8 years old mentally, but able to fool everyone he meets for a little while.

We felt aweful when the doctor told us he had a 5% chance to live. Your mind races with all the things you coulda woulda shoulda done. After a major surgery to remove the esophagus, and a year of chemo he beat this cancer.

I know you have done everything in your power. It is terrible, but it is not your fault. You are such a caring loving person and it tears me up thinking about your situation.

Put you and your family on a prayer chain we have going.
Much love and 's to you and yours.

I want you to know that my family and I are thinking about you and praying for you during this difficult time!!

May God grant you the strength, peace and comfort you so need!

Oh Sweetie....

I am at a loss for words. I wish that there was something that I could say or do that would change this whole situation for you. I can not even pretend to imagine what it is that you and your family are going through right now. I am sending up many prayers for you, your family, and your beautiful little girl.

I am so glad to hear that you all will not be alone during this time. It is heart breaking to hear that you have family that is unable to be supportive or to understand the choices that you have made. But, that is not for you to worry about. You are doing what you think is best for your child. That is all that any of us can do. It is not for anyone to judge you and the very hard choices that you are being forced to make now. It is so very easy for people to say "Well...I wouldn't handle (fill in the blank) that way. If it were up to Me, I would (fill in the blank)." It is one thing to say what you *think* you would do, and another when you are actually forced into such a situation and HAVE to make such choices. People can think all they want, but this is your little girl that you are trying to make the best decisions that you possibly can for. That is all that matters, and to Hell with anyone that tells you any different.

I understand all of the second guessing that you are doing right now, but please try not to beat yourself up about this. I agree with what Allen said, and know that if you had ANY indication that anything was wrong with your precious little baby, you would have done everything you could to try to get her help. Look at it this way too, at 4 months of age, she has had doctor appointments and check ups and what not. The doctors missed this too.

Just know that we are here for you. Please let us know how you are doing, and don't hesitate to come and Vent, or Scream, or Cry, or ***** you're head off at how unfair all of this is, or just ask for a shoulder or some . You need to do what you need to do, to try to keep yourself as strong as possible through all of this....for both yourself, and your family. So, let us try to help you do in that, in any small way that we can. Ok?

Love you, Sweetie. My heart is breaking for you, and I am sending up so many prayers......I only wish that I could do more.


Jose