This is our miracle child, Janice. She is now 11 1/2 years old, and in a regular 5th grade class. These two pictures show her when she was 9 years old. Below, are stories that I wrote. One is a story I wrote about her back in 1991, when she was 3 years old. The second is a letter I wrote to her for a school assignment.

1991

Janice is now three years old. She is a pretty normal kid, who loves to tease, by pulling daddy's beard. She cracks up laughing when a brother or sister is "yelled at," and loves to sing. Janice is a miracle, a child whom some felt would never even survive, let alone bring so much joy to others.

Three years ago, my best friend, Alice, told me about a little girl who was blind, and who needed a family to call her own. She was only a few days old, but I didn't even want to hear the details, because I already had several kids. Three days later Alice called again, and I agreed to go see the little one. I walked into the N.I.C.U. unit, and saw so many teeny, tiny babies, each struggling for life. Then I saw Janice. She was so small, a tube hung out of her mouth for feeding, wires monitored her oxygen level, heart and breathing. Her body was pale and almost transparent. I gently, and oh so slowly put my finger against her hand. She took her thin little fingers and wrapped them around my finger. I knew immediately that she would be okay, and that indeed, she was my daughter.

Janice with her tube for oxygen. Normally, the tube would have two little tubes to go in the nose, but since Janice's nose was blocked by brain tissue, we had to cut off the two short tubes, and just lay the tube across her mouth/nose area. But, even at that young age, she was stubborn, and would pull off the tube. Sometimes, we would lay it by her nose as she slept. She also had a gavage tube. Normally, (I use that word a lot) the tube would go down the nostril, but...her's were blocked, so it had to go down her mouth and throat. We would tape the end to her cheek, but...she is stubborn and she would pull it out. At first it was pretty scarey to put in the tube. You had to be careful not to let it go into the lungs, or you could drawn the child!! We used a stethoscope to check the stomach to see if we could hear air as we pushed a little into the tube. It was quite interesting to me, because she actually became used to our putting it down her throat. Just the idea of that makes me gag. We then had to hold a syringe with her formula, above the tube. When I did it at night (we had her in a crib right by our bedside), sometimes every 2 hours, I would get quite sleepy. Once, or twice, I awoke as I spilled the formula on myself, ha, ha. It was a hard time, but it sure built up the bonding process between her and us.

Janice was born with Amniotic Band Syndrome. That basically means that the amniotic sack ruptured, five weeks after conception. The rupture left strings of the sack wrapped all around her body. They wrapped her up like a kitten playing with a ball of yarn. There was no fluid to protect her delicate body, or to provide her with the freedom to move. She became more entwined, everytime her minute body tried to move. Two of these "bands" were wrapped around her neck, enough to kill most children. Some bands almost cut off the circulation in several fingers and around her ankle, causing unusual growth. One band totally cut off her big toe. Two fingers were fused together. One band may have come her face and caused cleft lip and palate, and deformities of her nose. She was also born with no eyes. Both hips were dislocated, and one leg did not have a regular hip socket. One leg is now 1 & 1/2 inches longer than the other. Her soft spot on her head started from between the eyes and stopped at the lower back of her head. Part of her brain was in the nasal area, and she even had a second set of very small sinus cavities, that were connected by a weaving pattern of tubes that ended as pin point sized holes, just above her top lip. So many problems for a body that weighed only 3 pounds 4 ounces at birth, and dropped below that later.

The birth mother did not even know she was pregnant until 10 days before Janice was born. Both parents were college students and atheletes. No one knew of the "birth defects" until Janice was born. Amniotic Band Syndrome is the most common reason for natural miscarriages. It is not caused drugs, or a bad diet, it just happens. Most of these children die before birth, or soon afterwards. The parents signed papers to allow her to die, because the professionals thought she would die by the next morning (twice this happened). She could hardly hold down any food, even though she was being gavage fed. We couldn't move her too much. She needed to rest, so that she didn't burn up calories. So, I would sit with her in my lap, and ever so slowly rock her. There was not much hope for this precious child of mine. I loved her, I had hope for her, so I visited Janice every day, and touched her gently, or sang softly. Even our pediatrician, who is one of the best in the country, said he did not know if she'd be okay, or be profoundly retarded. Everyone loved her, and marveled at her daily fight to live.

As we began to really bond to Janice, we felt the overwhelming feeling of fear as we heard that the costs were around $3,000 a day...$3,000 a DAY!! Luckily, we found that our insurance would cover her 100%, but many, many people don't have good insurance, so the hospital has to waive a lot of fees. Later we had to have her taken by ambulance two hours away for further tests. While up there I discovered that she had been "Code 0." That means that they would do nothing if she started to die. We told them that we wanted her to be saved if that situation arose. That day, they put a little breathing tube near her bedside. It was to be used if she stopped breathing. As I looked at it each day, I hoped that it would remind others that she was a valuable person, and that she had a family who loved her no matter what. She has had many surgeries: brain surgery, hip surgery (she then was in a body cast for 3 months), surgery on her hands and ankle, and surgery on her lip and nose. She will have many more surgeries in the future, but this little girl, with her open smile, who shakes her head back and forth to feel the wind or sunshine, this little girl, is worth all the money, all the time, and all the love we can give her. And...there are many more children that will need this, expensive medical care. I hope everyone can open their hearts to these little children who fight for the chance to live, to laugh, to be loved, and to love.

Janice and Santa. She loved to touch his "real" beard. December, 1997.

Janice and her friend from church. He played the keyboard while Janice sang at the Radioathon. A radio station worked really hard on their first year of the radioathon, and made around $33,000!! I, mom, spoke...actually, I read a short summary about Janice, because I get too nervous, and knew I had to have it written out. Janice sang "Don't Laugh at Me," and did a wonderful job. Many people were crying, because the theme of the song touches everyone's heart.

Janice's 2nd grade teacher asked each child to have a person who is important in their lives, write why they feel the child is special. Janice chose me, Mom, as her important person. Here is what I wrote to her:

October 21, 1996
Dear Janice,
You are special to me because of your courage. The very first time I saw you, you held onto my finger. Your hand was so tiny, I had never seen a hand so small. You were not even 3 1/2 pounds on that day. There were tubes in your arms, in your mouth, hooked up to your chest and legs. Tears came to my eyes, yet I knew from your feather like touch, that you had courage, and I had hope and faith in you, even though others had about given up hope. You have had to go through so much pain from surgeries, but each time you ended up bringing sunlight and joy to everyone at the hospital. You have a way of saying things that make people happy, you make them laugh. After a while, during one of your long stays at Dorenbecker Hospital, you learned much about the hospital schedules. You would quickly yell out, "Oh, Oh, air in line, nurse, you better take care of that IV." I will never forget the day they took you by ambulance for a two hour drive. I followed the ambulance, all the way there. You were so tiny, barely 5 pounds, and hooked up to many, many tubes. When we arrived there, someone saw you in the issolette and said, "Oh the poor little darling." They thought you would not live. But you showed them, you showed everyone, that you are strong and brave enough to live and love and grow into a beautiful, little darling. Most times you have been brave enough to hold real still while nurses put in an IV, or took out stitches. It was hard, and as you got older, it became harder, because you knew it would hurt. Remember the first time getting your colored eyes? Dr. Kevin and I did not think you would ever stop screaming at him, "Stop right now, I've had it." Now, you just relax and you don't even whimper. And...all the many two hour trips for doctor appointments, tests, and hospital stays...wow...but each time you were able to sing and tell stories all the way there. That made the long trips seem to just fly by quickly.

You are special to me because of your faith. You love God with a powerful, gentle belief. You know how much you love Jesus, and you know how much He loves you. So many times, you make me smile, as you pray for things. Sometimes I even laugh, like when you prayed that you would shrink down to the size of a quarter, so that you could fit inside the lego log building that Marc just made. I needed to tell you that sometimes God says, "No" to our prayer requests.

You are special to me because of your singing. Each week you lift your voice unto the Lord...at church, at choir, during family singing at family council meetings, and even when you're in the bathroom. I love all the songs you make up, some serious, some just belly whopping funny. You were able to memorize songs, and sing them on key, long before some people even knew how smart you were. You amazed doctors and nurses as you sang to them.

You are special to me because you love me. Hardly does a day go by, without your telling me that you love me, more than once. Your hugs make me feel warm inside, even if I had a rough day. You often say, "This hug is to last you all day, while I am at school. Will you miss me?" I so enjoy seeing you show love for your brothers and sisters, by playing with them, reading to them, giggling with them.

You are special to me because of your kindness. Many times you help me by feeding a bottle to Roger, or setting the table, or washing the table, or sitting by me on the couch. You share toys, most of the time, with others, and you always have a nice thing to say about other people.

You are special to me because you are my one and only, most favorite, 8 1/2 year old daughter. I am so thankful that God chose you to be my daughter. I love how you tell me that when you grow up and marry, that you hope your husband will find a job near us, so that you and I can shop together, and visit at our home. Yesterday, you were quite concerned, and said to me, "Mom, what will I do if I need diapers for my baby, and you are gone on vacation, and my friends are gone, and my husband is at work...I guess I will just have to walk to the store...if I can find it." You are also, one of my best freinds. That may sound a bit strange to you right now, but a friend can really be anyone whom you love to be with, whom you have fun with, whom you can share secrets with, and whom you want to help.

Janice, You are special because you are you. I love you, my little knucklehead, my sweetie pie, my funny bunny, my chickadee, my child.

Love From,
Mom

Dad and Janice in our living room share lots of stories, or just rest and watch TV.

Janice was about 4 years old in this picture. I sure wish I would have dated all pictures.

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