I am about to embark on a journey that is really quite difficult. It will be a short one though, it ended much too quickly. This is going to be the story of my little angel. Her name is Lindsey Leanne Griffin. She was born September 17, 1997. There were several 'strange' things that happened when this child was born.

First of all, she wasn't supposed to be born until November 2. But she decided to come anyway. And boy, she came into the world the hard way too. Lindsey was the third child to her mother, Heather Lynne Wixom, and by far, the hardest labor I had watched my child endure, even though Lindsey was the smallest. Poor Heather, she was barfing and in such pain for the longest time, or at least it felt like a very long time. Things went really fast at first -- in fact, I didn't think I would make it to the hospital as it takes about an hour to get there but, by the time I got there around 8:30 p.m., things had slowed considerably. And her labor went on and on and on. Then finally, at about 12:20 a.m., our little angel finally arrived.

The doctor spanked her and we heard no cry. Inside, I was panicking but dared not make a sound. Then finally, we heard a little noise from our angel. What a sigh of relief I felt. They cut the umbilical cord and rushed her off to the heat lamp. I felt so relieved and I know Heather and Rusty, Lindsey's daddy, did too. I thought all was well by then. The hard part was over.

Then I stepped over to the heat lamp where they were cleaning her up. I saw how teeny tiny our angel really was, 3 lbs. 2 oz., like a porcelain doll. Rusty stayed with Heather. I looked at my third little grandchild in great surprise. I didn't say anything for what seemed like the longest time. Then finally, I asked the nurse -- what is that with her hands? The nurse just shrugged her shoulders and said she didn't know. I couldn't believe what I was seeing. I was in shock. I realized that there was something wrong with my angel. You see her hands were deformed. She had two fingers on one hand, an index finger and a thumb and the other had two curled up fingers and a thumb.

I didn't know what to think or say, so I didn't say ANYTHING. I just walked around for a while out in the hall, thinking, thinking, thinking. I told Rusty's parents there was something wrong with our angel. His sisters started crying. I told them she was breathing okay, only on a respirator for a short time, but something was wrong with her hands. We all knew then and there that she was going to be our 'special' baby. I tried to reassure them that everything was fine, we will figure things out later. They were in shock like I was.

I went back into the room. Then Rusty went over to the heat lamp. He stepped back quickly and with big ole alligator tears in his eyes and said what's wrong with her. All I could say was I don't know. I just hugged him and hugged him. We went out in the hall and all of us just hugged and stood there, dumbfounded.

Finally the doctor came back and I yanked him over in the corner and begged him to tell me what was wrong. He said he just didn't know but that usually, something like this happens when there is chemical exposure. He asked me if Heather had been exposed to any chemicals or if she had been doing drugs and all I could say was I don't know, NO, I don't know. He said that it was very important for me to stay calm and that we would go together and talk to Heather.

So into the room we went and I sat on the bed next to Heather. She kept asking what's wrong -- she could tell by the look on my face something wasn't right. The doctor told her that the baby was going to have special needs but that she could handle it. He explained that she had a condition called phecomelia, and she would probably need prosthetic limbs in the future. I told Heather that we would all be here to help in any way we could. Somehow though, she was angry with ME. As though somehow, I made the baby this way. So I just went downstairs and thought about it for a while. I already knew the part about being angry --- about how you lash out at the person closest to you because you just don't know what else to do. I had accepted that from the very beginning. I knew she didn't really mean to be angry at me. And sure enough, after a while, she said she wasn't upset with me, she just didn't know what to do, or WHO to be upset with. After all, she was only 19, how could she possibly know what to do.

Well, what next -- what do we do now. The doctor said that the small hospital she was born in didn't have the facilities to take care of her so they wanted to life flight her up to Kansas University Medical Center. They could take much better care of her there. Heather would have to stay behind though, at least six hours.

So they bundled her up and off we went. By the time I got there, the sun was just coming up. I went into the Neonatal ICU and they instructed me on how to wash my hands and wear a gown for the first time. I got over to her heat lamp and just sat there and stared at her, rubbing her in her favorite spot, right between her eyes on her forehead. She didn't cry but she made this little whispering sound. Such a sweet little sound. The doctor asked me if she had ever had a normal cry and I didn't know what to say as I thought back to when the doctor spanked her and it took her a while but she finally made a sound but no, it wasn't a normal 'cry.' After a long while, they asked me if I wanted to hold her and of course, I couldn't wait. They bundled her up and fixed all of her monitor leads and IV's and placed her in my arms.

This wasn't like when Brittany and Lexie, Lindsey's sisters, were born. This was totally different. I had this feeling in the bottom of my soul that is indescribable. I was happy and sad at the same time. As I held my little angel, one tear dropped, then the flood came. I felt so helpless and didn't know what to do. I just sat there, waiting for someone to give some answers, but no one had any.

Heather arrived about 12:30 p.m., looking so tired and pale. She wanted to be near her new baby, and hold her. Lindsey's Grandpa Wixom came and wanted to hold her, and her great grandma and her Uncle Johnny and all kinds of great aunts and great uncles and cousins. The hospital gave Heather and Rusty a room to stay in that was donated from the Children's Miracle Network. At least she could be near her babe. They stayed in that teeny room for 3-4 days and finally were moved to the Ronald McDonald House across the street. They ended up staying there for a very long two months.

After about four days of all kinds of doctors and nurses poking and prodding and just looking --- the geneticist finally arrived. She took one look at Lindsey and knew right away what was going on. She said she knew what syndrome she had. Once again, I was in total shock. I never dreamed it was a syndrome. A syndrome, what??? You mean like Down's Syndrome???

She set up a meeting for us the next day. Yes, we had to wait another whole day to figure out what was really going on. She took us into this conference room that had a view like heaven at night. You could see forever almost. Heather, Rusty, Brittany, Lexie and I, as well as the geneticist and two other people sat there, waiting for them to say something -- anything.

Of course, Brittany, didn't like to sit there, she wanted to run around and play. So I only heard part of what the doc was saying. She pulled out these pamphlets on Cornelia deLange Syndrome. She explained that people with CdLS were retarded, hard of hearing or deaf, vision impaired and sometimes never walk or talk. I couldn't believe I was hearing this --- she really did have a syndrome --- she really was retarded --- she really was 'different' than a normal baby. Then Brittany decided she didn't want to sit there at ALL anymore so I had to take her out in the hall, out of ICU. She started screaming for her mommy and didn't understand why I was taking her out in the hall. One of the nurses came up and told us we'd have to leave if she didn't be quiet -- there were mothers and babies sleeping down the hall. Oh how that infuriated me but what to do --- take her outside is all I could do. But I wanted to HEAR what the doctor was saying.

Well, me and my dad, great Grandpa Fergason, took Brittany outside. We let her walk around on the sidewalk and play in the grass.

I was just trying to take it all in and understand why and what had caused this to happen. The doctor told us it was a genetic occurrence and quite rare. She said there was nothing Heather could have done. It wasn't her fault this happened. It was not a familial gene that was passed on, it was a mutated gene. They only thing they knew for sure was that it was located on the long arm of chromosome 3. Beyond that, there was no way to tell the amount of retardation or what the future would hold for this special child. They said all we could do was love her and make sure she had special care, special schools.

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