It was two weeks before I got to see her. She was 7lbs. 13 in. long. She was the biggest baby in the neonatal unit. My first visit with her was only for about 2 hours. I was only allowed to go down there with the doctor's permission. It was the hardest thing to leave my baby. 

I called every night, sometimes more than once. My husband and I was there all the time during the day and evenings. One doctor came in and told us that she had a rare syndrome called "Apert", and she also had Cerebral palsy and seizures. They told us we would probably never go home with her. 

Three days later she was well enough to come home and be with her family. It was December 2, 1989 that we got to bring her home. This was the best birthday present I had ever received. (My 21st birthday was on the 10th of December, most people would have been out celebrating by drinking, I was thrilled to bring home my angel). The three of us stayed with my parents for three months after we came home. I was too afraid to take her home by myself. My parents and sisters were the best support (they still are). 

Dannyellee has had at least 35 surgeries in her 11 years. These surgeries were so hard to see when she was a baby....they were also hard to handle as she got older. She has taught me so much about love. 

In July 1996, her father died of a heart attack. I thought I'd never make it without him. She is a man person. She loved her dad so much. In October 1997, she was in and out of the hospital with bowel obstructions. She came real close to dying and then came back to me. All I could think of is not you too. During this time another special man in her life was struggling with cancer. Her pappaw.....they were very close to one another. He nicknamed her "Missy". She knows her nickname too. He had asked me not to let no one use Dannyellee as a guinea pig. I promised him I wouldn't. Easter Sunday, April 1998, her pappaw passed away...I was so mad.  How could the other person we loved so dear pass away. This information plays an important role of information that will be given later in this letter. 

During all this Dannyellee and I still carried on. I had been single since 1996. I wanted so much to have a man in our lives. I knew that it would be impossible because I knew it was very rare to find someone who would accept both of us. I prayed so hard for the longest time. In October 1998, I met this gentleman by the name of Donnie Sparks. I told him that I wasn't sure if I wanted a relationship. I told him of Dannyellee. Well I was totally shocked next....he came over every weekend. Dannyellee fell in love with him, he also fell in love with her. He also has custody of his daughter who is 12. She also fell in love with Dannyellee. Dannyellee also fell in love with Samantha. In May 1999, my daughter and I married our new family. 

Dannyellee had to have hip surgery November 18, 1999. I had a hard time with this because both of my parents had always been there with me when she had to have surgery. I had asked my dad to take care of her during surgery. The surgery went just fine. Later that evening, she was being fed through her g-tube and had been given high doses of morphine. My husband and I had just came back from being down stairs to get a diet coke. When we went into the room Dannyellee sounded like she was snoring. That was something she never did. We started to suction her and when I did, she started seizing. The nurses came in. My little angel had stopped breathing. Her heart was beating. Her lung had collapsed from her aspirating. She was ventilated for three days. She came of the ventilator to end up back in ICU two weeks later with chest tubes in each side. Her and I came home three weeks later. This was very stressful on my new family. I knew for sure that my husband would ask for a divorce. I was wrong again. 

Since last November, we have been in and out of the hospitals with repeated pneumonia. We were able to go to Disney World in September 2000. She had a great time. My husband put her on the Goofy roller coaster. They went wading in the pool. To the beach and seen Shamoo. She did lots of things with this grown up kid. This all happened thanks to Make a Wish Foundation. 

My angel once again was struck down with pneumonia during the last week of October. On November 2, 00, her doctor came into our room and told us we needed to call in the family that she would probably pass on this day or the next. Dannyellee is immune to oral antibiotics. On this day, she quit breathing on three or four different occasions (then she would take a breath out of no where). The nurses on the evening shift said it wouldn't be much longer because her pupils were beginning to be fixed. This was so awful to have to go through. Like when she was born, there were a room full of people (175). We were preparing for her to pass. The pastor from our church went to teach that evenings service. He told the assistant pastor to take over, he needed to go back to the hospital. During the night it was very touchy. 

The next morning, I had them to drop her oxygen down to 50%. I have DNR papers on her. I thought well maybe I need to do the next step to let her go. I have talked to her quite a bit and told her it was ok to go live with Jesus, pappaw and daddy. Out of nowhere, she opened her eyes and started playing. She even said "num...num". I just cried. I found out later that day, that Thursday evening service consisted of intercessory prayer and the whole church was in one accord prayer for Dannyellee to turn around and come back. 

Since this happened, I ask her if she seen pappaw....she just squeals to the top of her lungs and laughs and plays. I know that in my heart she seen a part of heaven, the angels and her pappaw. 

I have now chosen to keep her home. The doctors are shocked, they still have told us that there is nothing more they can do for her. It is in Gods hands. We know that first hand. 

Thanksgiving day, she had squirmed her way under her pillow. My mom heard her faint cry. When she walked in the room, Dannyellee's face was black and blue. Mom calmly yelled for me. I thought I was going to die. I immediately put her oxygen on her. She quickly came back to her normal color. She was fine after that. I know in my heart that is my mom wouldn't have heard her she would have passed away. 

Please don't read this and think all I have wrote about us is negative. Today, I can say by the grace of God and the strong spirit of Dannyellee that she has a very important role on this earth. She is the sunshine in a lot of peoples lives. I am so thankful for her. Not only is she my daughter, she is my best friend. I plan on keeping her until God calls her home. This little angel of mine has suffered a lot during her life, but she has more happiness and love in her heart than anyone could ever know. 

I ask when you read this don't feel sorry for us. Just think... wow... what a little trooper. She is a very strong willed person. Even though, she may not be able to walk, talk like we do or even look like we do... she is so very precious in a lot of peoples hearts. 

We want to encourage everyone. I know our road is still very rocky and we may wake up at anytime and find her not alive... but what everyone needs to remember all these children will always live in our hearts. Dannyellee has taught me more about life than I could ever think about teaching her. I thank God that he chose me to take care of such a special human being. 

Though, I don't know how long she will live... she will always be in me. I have learned to cherish every day that I have with her. Not a day goes by that she doesn't smile and laugh with me. 

May God Bless 

Kathy Sparks