Thursday, May 21, 2008I absolutely love being a blogger! I love maintaining my daughters blog and being a blog follower. It is such a nice medium to share your life with others. I know that my blog allows people a snapshot into my life, but that's all it is - a snapshot. I understand that people may have their own opinion about what I do with regards to Kennedy, however as our mothers used to say: "if you don't have anything nice to say, don't say anything at all"!!!! I was blindsided earlier this week with a nasty e-mail from a fellow blog follower. Just to set the story straight - My husband and I are doing the best we can with the cards that were dealt to us. We are doing everything we can to support and help our daughter live to her full potential. I am just not sure why people find it necessary to be so negative and evil. Brian and I were deeply offended and hurt by the following e-mail we received from
cheryl4941@yahoo.com:
You don't know me, I just ran across your blog as I often look at them because of my own child I lost. It is a very hard situation and family and friends tell you what you want to hear, not what is best, because they don't want to hurt you. A nurse finally sat me down and talked HONESTLY to me about what I was putting my child, my husband and the rest of my family through. It hurt, but you know the truth hurts, but as the Bible says, it will also "set you free." Why are you doing this, more of the same over and over again, it's a life sentence. It would be different if there was light at the end of the tunnel, but you KNOW there isn't.
You say that "your daughter is the strongest person you know. You say "she has and continues to endure more pain then most people do in their entire life. She has the uncanny ability to fight and a will for life that you don't think most of us possess." It is a very sad situation, but is what you're doing best for your child, or what is best for YOU. The machines are doing the fighting, NOT her. Her will is to go home to be with our Lord, but medical intervention keeps stepping in and preventing it. She has tried to show you what she wants multiple times, but you won't let her. Why are you trying to stop this baby from being led home to the Lord, where she can FINALLY have some peace. Stop the pain and suffering for this poor poor baby. Do you know what it is like to struggle to breathe and to have air pushed into your lungs. It is horrible and you are forcing Kennedy to endure this repeatedly, as well as the pain. I understand, trust me, I have lost a baby, it is not easy. But we do it for our own SELFISH needs, not what is best for our child. I am sure she does not want to continue living in these situations that she is being forced to tolerate. It is so unfair for you to continue to put her through all this horror and pain, because you can't handle not holding her, dressing her up, taking her places and pretending everything is normal. You say in your eyes she is perfect, well very sadly, she is not and you know it and it is time you stop pretending and face what reality is. You say you worry about what you will do without her. You have fought a good fight, but she is tired and she is not here to satisfy your needs, you are here to satisfy hers. I did the same thing with my first one and finally realized after 2 years, it was the most selfish thing I had ever done. Hopefully you will find some peace and realize it before she suffers more needlessly. Let her go and stop the insanity.
I continue to pray for wisdom for you and peace for Kennedy. Good luck to you and hopefully your baby can finally rest in peace. Life does not seem fair at times, like you have mentioned "WHY ME", why is this happening to me". I believe if Kennedy were able to convey her feelings, she would be saying "WHY ME" because this is happening to HER.
I hope this hasn't hurt you too much, it sure hurt when the nurse spoke to me, but when I took the time to really truthfully and logically think about what she said, it all fell into perspective and I was more at peace with the truth and reality of the dire situation at hand. I let my child go with peace and dignity, instead of forcing her to live for my selfish needs. I can hold my head up high knowing she is at peace without pain and suffering like she went through for the first 2 years.
Peace, love and God be with you.
I don't feel that I need to justify our decisions. For gods sake - if we would have listened to the doctors advice in the beginning Kennedy would not be here with us today, which would mean that we would have never had the chance to spend five of the best months at home with her. We are doing our best, there is no book that tells you how to deal with situations like these and I would appreciate it if you kept your negative opinions to yourself. If I do say so myself, Brian and I are doing pretty damn good!!!
