Part of my life story, Helen

[Guest guest]

My Mother passed away when I was 9 years old leaving 6 of us children behind... I was second oldest... We were 10 - 9 - 8 - 4 - 2 - and three hours old... Yes, she died after childbirth because of a Dr's. stupidity by cutting the main artery, she bled to death... I have been ill since I was 11/12, so I have been battling different illnesses for the last hmmm 44/45 years... I had to move in with my grandmother to take care of my two younger brothers at the age of 10, my Uncle started molesting me when I was 11, as he said it was his house and that if I said anything I would be sent to a girls reform school, as my grandmother, his mother, would believe him not I... He was 18... I had heart problems at the age of 15... I have been having the muscle aches and all the goodies with fibro and SLE since the age of 11, it was back when there still wasn't a name for it... Back then it was all in your head... I married at 16, two months later I found out I was pregnant, 4 months after that I slipped on ice and miscarried our son when I was 4 months pregnant.When I was 17 I ended up in the hospital with severe Pericarditis and rheumatic fever... I almost died during this time... When I finally was allowed to go home I was in bed for 3 months and then the next 3 months was only allowed to walk to the table and bathroom...We had our son Jeremia when I was 19... Our daughter tte ine (ine was my Mothers name) was born on Oct 19th 1971... She was a beautiful baby, she was perfectly normal until she was 3 1/2 months old... She was still sleeping in her bassinet in our bedroom, and I am a light sleeper, when I awoke to a gurgling sound, I got up to check on her and she was already blue with bubbles coming out of her mouth... I picked her up and screamed at my husband, he came flying out of bed, we turned her half upside down and started rubbing her and she gasped for air... I was so scared... Back then we didn't have such a thing as rescue... She started breathing alright and I sat in the rocker holding her the rest of the night... As soon as the Dr's. office opened I called and took her right in... I told him what happened and he checked her out and said she had a cold! So he gave me some medicine and told me to take her home and watch her... Had to go back in two weeks and by then she was already losing all the abilities to raise her head and sit and such... He called a pediatrician and I took her from our Dr's. office right to the city to be seen by the pediatrician that same day... She was laying on the table and he took her two little hands and raised her up and she just flopped backwards and then he let go of her... I was so mad at him, and told him don't you Ever do that again to her!!! He sent her straight over to the hospital as he said she needed to have some tests done... He done his test and he was always nasty... She was there for two weeks and they still weren't any closer to finding what was wrong with her... Then one day while I was still home, as I would spend the mornings with our son then I would spend the entire afternoon and evening with our daughter at the hospital, the pediatrician called and as cold as he was, he told me our daughter was dying and would be dead at this rate within two weeks... I was dumbfounded, as far as we knew she was in there for her cold... I was shaking so bad, I headed to the hospital and picked her up and sat there rocking her crying... In walks Mr Dr. and said that since she was dying we should put her in a home so that we wouldn't get any more attached to her!!! I looked up at him and ordered him out of the room and told him to Never come near her again... By this time there had been several Neuros that had seen her and no one had any answers for us... Shortly after that she went blind, her beautiful little blue eyes searched and searched wildly for us, she couldn't cry anymore, she would just let out a little ah... I knew she had gone blind before the Dr's even had to tell me... Finally about the 7th or 8th Neurologist they had asked to come in and see her looked into her blind eyes and had an answer for us... He had just come back from a medical seminar and they were discussing this rare disease and were told that they would most likely never see it in their lifetime... But here it was... Back in 1971 there were only 100 cases of this dreaded disease reported in the World... She was diagnosed with Cellboid Cerebral Leukodystrophy, very little was known about this disease, but they did know it was a hereditary disease and both parents had to have the gene... So we were both tested and sure enough we were both carriers, they tested our son also and he is a carrier also, but he did not have the gene that would allow it to attack him, he will just carry it on to his children if he ever had any... The Dr. said she could go anytime, at this point she was only about 6 months old... My heart was breaking and I really lost it... I held her tight and rocked and rocked and I looked up to God and I cursed him, I told him that he is a vengeful God, How can a loving God put a child through this, I said you took my Mother away when I was a child and I didn't understand, I have been fighting illnesses since a child and I didn't understand, but now your taking my baby away and I Really don't understand... I said God, if you are such a Loving God, Please don't take my daughter away, at least not until I can try and understand why you are doing this, and I sob uncontrollably... Finally I had no tears left to cry, the nurses would check on me ever so often but did leave us alone... After that day I was allowed to stay at the hospital until I was ready to leave, they didn't make me leave when visiting hours were over... I'd stay until around midnight and go home, get a couple of hours of sleep then get up with our son and repeat the days over and over like a robot... One week came and went and another and the Dr's. could not understand why she wasn't passing on... Then it dawned on me that God did hear me and he was giving me the time I needed... I asked them if I could just take her home and they told me yes as soon as I learned how to feed her through the tube, as she had lost the ability to suck on a nipple weeks ago, she had no strength left anymore so they had put a feeding tube down to her stomach... She just existed... It took another week and we took her home... She couldn't hold a temp so she slept on a heating pad just to keep a 97* temp... I had to feed her every two hours around the clock and turn her... It was an existence for us all... tte made a couple of more trips to the hospital but they were short stays, then finally I took her home and said I would never take her back there, she seemed so scared in her face when she didn't hear our voices, I don't know how to explain how I knew, cause she couldn't smile anymore, its just I knew... So there were many close calls and many all nighter's, and she stayed... Finally when she was 16 months old it had been about three days and i hadn't had any sleep, she was running a fever on her own and for the first time I thought I seen pain in her face... I looked up at God and tears were flowing down my face... I told him, God, I will Never understand why this happens to children, but I think I can finally let her go and not blame you for it... I'm so sorry that I cursed you in the beginning, but God I just don't understand... I think she is ready to go, and I think I'm ready to let her go, but God please take her quick, I can't handle much more... With in the hour our beautiful baby girl, tte ine went to Heaven on March 6th, 1973... But God wasn't finished with us yet!!! We knew that if we had anymore children there was a 50/50 chance that the baby would have this dreadful disease, I knew we could not go through this again... So at night I would Pray to God that I wanted another little girl, then in the morning I would say, No, I can not go through that again... This went on and on... We moved from our renting home we lived at where tte died to our own home on July 1st of 1973, with all the moving we didn't have time for personal time... We had already talked to the Dr. and decided that I would have a tubleligation done so that I could never have anymore children and give them the death sentence like our daughter... On July 11th I entered the hospital to have a complete D & C done and have my tubes cut and tied, I was crying the morning of the surgery, I was still saying the same Prayer and now I knew there'd never be any more children for us... I had the surgery done and of course came out of the anesthetic vomiting and continued vomiting for the next 9 month's!!! Yes, the Dr's have never been able to explain it and they even told me They just don't understand how I could be pregnant!!! He told me I could have an abortion, because their is No Way the child I was pregnant with would ever be normal, there was no sign's of pregnancy and they had scraped the entire uterus out as I had several polyps, then he tied my tubes... 9 months later , lacking 2 days, from the day of surgery, our new healthy daughter was born weighing in at

9 lb' s. 4 oz's!!! It was a very rough pregnancy and Oh the Angel that helped us, I could go on and on, but I have already written a bookWell that's part of my story... The Angels have helped us many times over... ((( Hugs )))Helen

"When life's problems seem overwhelming, look around and see what other people are coping with. You may consider yourself fortunate."