This will be the hardest post for me to write. I know this will help my journey on the healing process. I don't talk alot about my first born daughter Kacie the pain is over whelming. Kacie was born with Aicardi syndrome. She was missing the middle part of her brain. Had sever
seizures. She could not walk or talk and was tube fed. She had the most beautiful blue eyes and the prettiest sandy brown hair. Her smile would melt your heart. I knew from the time she was 2 months old that her life here on earth would be very limited. I tried to make her life as enriched and wonderful as I could. Kacie did have a purpose here on earth. She and I went to the State Capital to makes changes in health care reform for all children born like her. They seemed to just want to put kids like Kacie in a "home" so they (insurance company's) did not have to pay to provide good quality care.Well ,she and I rock their wall's. The Wall Street Journal sent a reporter to spend one day with our family to see how we provided care for Kacie at home. The article came out and our congress staff were over whelmed with calls. In 1997 a bill did pass for HMO'S to provide care at home for children that were profoundly handicap. I will never for that day!! I had fought for so long to keep her at home where she belonged. She did get to attend school where all the staff and kid's fell in love with her. They would fight over who got to push her in her wheel chair. We were blessed to have several nurses that helped take care of Kacie and did such a wonderful job. I still keep in touch with them. As time went on Kacie illness got worse. She had wonderful doctors that took excellent care of her and with out them I would not have got as many quality years as I did. She became very ill in November 1998 and the doctors told us that the time was close and there was nothing else they could do for her. From Nov to Feb I spent every waking hour with her and we read books and watched her favorite movies. On February 8th 1999 at 6:33 pm Kacie journey here on earth was over. She died in her bed surrounded by the people that she loved. I will never forget this day as long as I live. There is not a day that goes by that I don't think about her and wish that I could have just one more smile. I sure look at heaven alot different now. I know that some day we will meet again. On her head stone reads: She stole the hearts of everyone!
seizures. She could not walk or talk and was tube fed. She had the most beautiful blue eyes and the prettiest sandy brown hair. Her smile would melt your heart. I knew from the time she was 2 months old that her life here on earth would be very limited. I tried to make her life as enriched and wonderful as I could. Kacie did have a purpose here on earth. She and I went to the State Capital to makes changes in health care reform for all children born like her. They seemed to just want to put kids like Kacie in a "home" so they (insurance company's) did not have to pay to provide good quality care.Well ,she and I rock their wall's. The Wall Street Journal sent a reporter to spend one day with our family to see how we provided care for Kacie at home. The article came out and our congress staff were over whelmed with calls. In 1997 a bill did pass for HMO'S to provide care at home for children that were profoundly handicap. I will never for that day!! I had fought for so long to keep her at home where she belonged. She did get to attend school where all the staff and kid's fell in love with her. They would fight over who got to push her in her wheel chair. We were blessed to have several nurses that helped take care of Kacie and did such a wonderful job. I still keep in touch with them. As time went on Kacie illness got worse. She had wonderful doctors that took excellent care of her and with out them I would not have got as many quality years as I did. She became very ill in November 1998 and the doctors told us that the time was close and there was nothing else they could do for her. From Nov to Feb I spent every waking hour with her and we read books and watched her favorite movies. On February 8th 1999 at 6:33 pm Kacie journey here on earth was over. She died in her bed surrounded by the people that she loved. I will never forget this day as long as I live. There is not a day that goes by that I don't think about her and wish that I could have just one more smile. I sure look at heaven alot different now. I know that some day we will meet again. On her head stone reads: She stole the hearts of everyone!
