michelle

Our story has one of those fairy tail beginnings. Larry and I met in the 7th grade. We sat next to each other in math class. I didn't really take much notice of him, he was the boy that kept trying to look at my papers. One day I let him, I had marked all the wrong answers on purpose and let him see them; then just before the end of class I changed mine. When they came back he got the F and I got back a B. He should have known right then and there that I was trouble! Larry and I started really dating in High School, 9th grade. We fell in love and always said that after High School we would get married.

At the beginning of our Senior year, I became pregnant. I was so scared, but Larry was determined to talk to my parents and we were going to get married, same plan we had always had, it was just going to happen a little earlier than we thought. We married on 11/6/71 and our lives were blessed from heaven with our baby girl on 2/24/72. Michelle Lynn Wright was born. She was the most beautiful thing we had ever seen.

At seventeen, it's hard enough to try and make it in the world. We had great inspiration, our Michelle. At first everything seemed fairly normal. Being a new Mom, I wasn't sure what to expect. I did feel that Michelle was quite fussy too much of the time, I was told by many family members that she probably had colic. I excepted that and tried my best to console her.

It didn't take long for the fevers to start, and the vomiting. Michelle could not keep down any of her formula. Finally our family doctor sent us to a Pediatrician. Many tests were ran on her, yet no one had a clue as to what could be wrong. Our baby Michelle started to fade away right before our eyes. She had more and more difficulty eating. If she could eat, it never stayed down long enough to do her any good. She weighed less each passing day. She was admitted to the Hospital and spent a couple of weeks in before they realized they couldn't help our little girl. The doctor came in and told us that we needed to take Michelle over to Seattle. They had the Children's Hospital over there, other wise we would loose her. Michelle and I caught an emergency flight over, while Larry drove by car to meet us. This was all happening during the time Larry and I were to graduate High School. But away we went, we wanted to save our precious little girl. The Children's Hospital didn't keep Michelle but a few days and told us they needed to transport her by ambulance to The University Hospital. Once admitted there, it seemed to us our little baby was basically used like and experiment. She had so much blood taken, IV's, by now she was being fed by a tube down her nose. They tried an exchange transfusion to help drop her blood ammonia. A needle liver biopsy was performed for ornithine transcarbamlase and was found to have normal enzyme activity. Carbonyl phosphate synthetase had not yet been assayed. Because of her poor neurological status and apparent severe brain damage, she was reinstituted on protein formula to see if it would rise her blood ammonia. Yet after all that, they had NOTHING! If you knew anything about me at all, you would know the one thing I don't do well is show sad emotions in front of people. While we were there I was trying my best to be strong. For myself and for our child. Plus, family members were still causing problems with each other still trying to blame the "other family." Both believing that they had never had anything like this in their family before. Larry and I were at our wits end, and yet we had these doctors sit in front of us saying things like; I never see you cry, aren't you worried about your baby? She is going to die you know. I think back on those times...it's a miracle we survived them. The doctors told Larry and I they had done all they could for Michelle, we still had no idea what was wrong with her. They felt it would be best for us to take her home and prepare to "Let her go." We spent a few days more learning how to feed Michelle, placing the tube down her nose, etc. I learned how to measure and administer all of her medications. Suction her when it all came right back up again.

Once again, Michelle and I boarded a plane for home while Larry drove back to Spokane alone. We were determined to take our baby home and make her as comfortable as possible. At home it didn't really seem that different from being in the hospital. I could give the same treatment as they did, but when the evening came I slept on pins and needles. Every little sound I would jump up to make sure Michelle was not choking on her own vomit. Suction her out and lay back down for a few minutes. I learned on my own that her little mouth became very dry during the day, so I got some lemon wipes to help keep her mouth moist. She could not cry or make any sounds at this time. Her facial expressions, when they happened always seemed to be a cooing look. At times I wondered if it was pain she was expressing. Her back would arch, her legs would become stiff. Some days the meds really controlled her seizures, but then she seemed lifeless. Other days she would still jerk, then it seemed like she was in pain again and I could hardly stand it. One of the things I would do because she seemed to enjoy it was draw a warm bath and hold her in it while I rubbed her arms, legs and back. It was the only time I thought she felt relaxed.

Michelle was getting down close to her birth weight, this made sores appear on her small body very easy. It made it difficult for her to lay down and become comfortable, so I held her most of the time. Wrapped tightly in her blanket for moments during the day she seemed content. At about 7 months old, Michelle stopped everything, she couldn't take any food, she didn't wet her diaper, she made no motions. I knew the end was near.

Michelle passed away in her sleep on 9/18/72. For us it was a time of such great strain. Finally our little baby would be at peace, but also we would be left without her to hold in our arms. Filled with emotions, and we had the doctors telling us we needed to OK an autopsy on Michelle. My first reaction was NO, then they told us we would never find out the real cause for her death unless we did it. One more thing to put her through, we did it and cried ourselves to sleep that night thinking about it. Her final diagnosis at that time was: Acute Diffuse Cerebral Sclerosis (Krabbe Type) and Patchy Hemorrhagic Bronchopneumonia. In January of 1973 we got a letter saying sorry, we still don't know what caused Michelle's death, but we are still looking. A few more months later we had a confirmed diagnosis of Krabbe.

We were referred to Genetics Counseling. In 1975 I once again became pregnant. My due date was 3/7/76. After prenatal testing was performed, it was confirmed that this child, a son would also have Krabbe. After going through Michelle's death, we made the decision to not carry through with the pregnancy. This was the time that we decided to never try again to have children. We didn't want to put them through it and frankly, I don't think we could have taken it either. For years we avoided the subject, all along family members would feel the need to tell us how they wish we would adopt, after all we would make such great parents. After talking to our trip to the Genetics Counselor, Larry decided to have a vasectomy. We planned on trying for artificial insemination. This would still give us a chance at being parents. But my body had other plans of it's own. I had endometrosis, and had to had a total hysterectomy. Well there we were, both sterile. Now what? Once again we went into denial. For years we told people we didn't want to have children, it's easier than telling them the whole story of you life. But again, one of many lonely, tearful nights together, we realized that as much love as we had for each other, something was missing...children. It was a delight to everyone when we announced that we had signed with a local adoption agency. My parents went wild! Long story made short, we spent a lot of money and after years of waiting on the list, we still had nothing to show for it.

In November of 1991 our lives were about to change for good. Our family was also growing weary of the waiting. At Thanksgiving time we sat around after our meal and started talking about how frustrating it was to just sit around and wait. My sister-in-law had talked to many times before this date about wanting to have a child for us, I had never taken her seriously. I made a joke about someone at work saying they wanted to carry a child for me, but my sister-in-law didn't laugh. She looked right at me and said, you wouldn't let someone that's not in our family do it for you when I'm the one that's been offering for more than a year now would you? We all started talking, attorneys were being called, doctors contacted. In March of 1992 a friend of mine donated her eggs, through our doctors office we picked out a sperm donor, my sister-in-law had the Invetro done on her and we waited for the results. Two weeks later an ultra sound was done and not only were we pregnant, but we were about to receive twins! One boy and one girl. I felt God had something to do with that. He had taken that away from me and now was giving me back this great gift. On 11/6/92 Larry and I celebrated our 21st wedding anniversary. On 11/12/92 our twins Alex and Alison were born. This date also is the birthdate of my sister-in-law that gave birth to the twins. They have been the greatest blessing in our lives. They will never replace our little Michelle, but they do help heal the pain and emptiness we felt without them.

Now at age 6 1/2, the twins know everything about how they were conceived in so much love, they know about their sister Michelle and we visit her at the cemetery every once in a while. I am a lot stronger there now with the twins to help me, they talk to her and tell her that they are here taking care of their Mommy and Daddy. The love in our family is something that can't be described, but it's not hard to see if your ever get the chance to meet us. My husband loves to tell the story of the twins. We have had the chance to place a happy ending to our story. High School sweethearts, celebrating our 28th wedding anniversary this November, along with our 7 year olds. Imagine that!

People that don't know us, ask, " Why did you wait so long to have children?" and we just smile and say; "We wanted to make sure the marriage was going to last before we brought children into the picture!'

Love and Peace to you all and thanks for taking the time to share our story. Feel free to e-mail us if you want, we would be happy to share your story.