FAMILY STORIES

(Evan Neal Jefferies & Jack Rice)

Evan Neal Jeffries was born on September 19th, 2003. He was 3 weeks earlier than expected and weighed 6 lbs and 2 oz. Everything went as planned in the hospital. He was good and healthy. After the second day in the hospital, we were sent home thinking we had a normal little boy only to find out 2 weeks later at a weight check that Evan may have Down syndrome. As we sat there in the office completely in shock, the world at that moment for me came to a halting stop. Being a nurse my mind started to race thinking the very worse. How could this be? I was supposed to take care of others not others take care of my family and me. I didn't want to admit that I was helpless and hopeless. While we waited testing to confirm his diagnosis, we went through a vicious circle of emotions. Crying one minute and in denial the next. We clinged to the fact that the only thing that alerted the doctor was the crease in the palm of his hand and some low muscle tone in his upper body. Some people ask us if we were outraged by the fact the hospital did not diagnose him. We are in fact glad we did not find out about Evan in the hospital. It gave us the time we needed to process and research everything we could and to realize nothing had really changed. He was the beautiful boy that God created and that we wanted and dreamed of.

In the meantime, a woman from the church brought us this notebook which you are now reading. We can't tell you how much we needed the support at that time. We received several phone calls and prayers from people in this very book. That made things a reality and reminded us we still had a baby boy who needed our care. We believe that strengthened our coping skills tremendously.

We finally received the final diagnosis and were referred to Dr. Tamison Jewitt's office. She treated Evan like her own. After several tests that day, Evan did not have any heart problems. He does have some low muscle tone in his upper body but otherwise is a healthy 6-month old boy. Evan is now enrolled in the Babies program and gets stronger every day with their help. He also has a spunky 5 yr old sister Jessie who will be a great example for him once she gets over the jealousy of having a new baby brother around the house.

I don't know what the future holds for Evan and this family. Does any family know what tomorrow brings? I do know that education, advocacy and lots of love will allow our children to succeed to their fullest potential. We are truly blessed that God chose us to be Evan's parents. We will continue to take one day at a time, say lots of prayers and remember that GOD DOESN'T MAKE MISTAKES. Please feel free to call us anytime.

Scottie, Sherry Jessie and Evan Jeffries 993-4751

December 23, 1997 -I am out with my mother doing some last minute Christmas shopping. We come home and my OB has called and wants me to call him back. I am scared to death. Doctors never call personally if everything is OK. He wants me to come in for an amniocentesis because my AFP is abnormal. I start calling my friends. Everyone knows someone who had an abnormal AFP and everything turned out fine.

December 24, 1997 -We have the amnio and then the doctor does an ultrasound. The baby looks perfect. We go out for breakfast and try to proceed with a normal Christmas. This is our first son's third Christmas and we have a lot of special things planned. During this time, I find myself praying. As much as I want to pray for our baby not to have Down syndrome, I find myself asking God to give us the strength to deal with the path he has chosen for us and to take care of my babies, the one I have now and the one I am carrying.

January 2, 1998 -We are wallpapering the dining room and the doctor calls. We are having a boy and he has Down syndrome. What do we want to do?

I can tell you those were the worst few weeks of agony for us. We had no idea what Down syndrome really was except that we'd seen retarded children when we were kids, but they were kept in a different part of school and they looked, well, different. We started talking with friends and family and gathering info. Some of our family thought that there were no decisions to be made. Part of them thought there was no way we should have this baby and the other part thought there was no question -obviously we should have him.

We were very fortunate to get good counseling and good information. We set up several appointments. First, we went for genetic counseling at WFU Baptist Medical Center. Dr. Jewett told us she wished she had a crystal ball to show us that everything would be OK. So did we. One of our main concerns was how this child's disability would affect the child we already had. Dr. Jewett assured us that Fox, our 2 1/2 year old, would be fine. He'd just love his baby brother. He really wouldn't care that he had Down syndrome. We were also worried about medical concerns and the quality of life that this child would have. We then went to the Special Children's School to get an idea of what children with Down syndrome were like. What a heartwarming tour! All of the children there are so precious, because first and foremost they are children, not children with disabilities. That was so evident. We also had an echocardiogram done at 18 weeks and again at 26 weeks to check the baby's heart. All was ok. Once educated, the decision was a no-brainer. This was our baby and that was final.

Jack Tanner Rice was born on May 20, 1998. He was 2 1/2 weeks early and ready to meet the world and his new family. I can't tell you the joy we felt upon meeting our second son. He was PERFECT!! (Yes, he has Down syndrome. You'll be amazed how quickly that doesn't matter anymore) Fox came to the hospital and all of our friends came and flowers were sent and it was AWESOME. I was so afraid that people would shy away from Jack because he had Down syndrome, but the opposite was true. There was such an outpouring of love for our little boy and any concerns by others of us having him were quickly squashed. He was adorable- how could you not love him?

Jack has had a few medical problems, but all in all pretty minor. He developed a bad case of jaundice and had to go to the NlCU at Forsyth for a week 5 days after he was born . What a wonderful group of people at that NlCU! ! They were like our extended family for that week. He did develop raspy breathing while he was there. They "scoped" his throat when he was 2 1/2 months old but basically all is ok. He also has tubes in his ears due to a lot of fluid build-up and ear infections. I can't say enough nice things about Dr. Will McGuirt, Jr. He is Jack's ENT. Jack has a lot of congestion and thick mucous, which doesn't help matters. We'll be seeing Dr. McGuirt for a while. I'm glad he's young. He also had some reflux but outgrew that as well. Jack also had a hard time gaining weight when he was young but just look at him now. He's a very healthy young man and a fairly good eater.

Jack attended the Special Children's School from 3 months of age until he was ready for kindergarten. There isn't enough space for me to rave about the love, support, and encouragement we received from the folks there. He wouldn't be where he is now without all the wonderful people that touched his life and gave him services while he was there.

Fast forward to now. Jack is attending Kindergarten at Konnoak Elementary. He loves going to school. He rides the bus every day and just jumps up and down with excitement waiting on Mr. Mac and Frannie. His teachers have helped so much. We opted for the TMD (trainable mentally disabled) program to start. Jack is a little behind his peers in potty training and communication skills, as he is basically still non-verbal. He is doing great potty training right now though. Also, Jack communicates through gestures and sign language. His receptive skills (what he understands) are way above his expressive skills (what he can verbally tell us).

That said, Jack does make his wants known. He loves chicken nuggets and Dad's homemade burgers, as well as french fries and chocolate. He cried when I tried to feed him green beans one time. He loves Scooby Doo, Shrek, and Tarzan. He can climb up into his and his brother's clubhouse and slide down a big slide. He loves to swing and is learning to ride a trike and loves to ride on the 4-wheeler with his big brother. He plays several computer games and has mastered the use of a cordless mouse. Bill Gates better be ready to hire this boy when he finishes school. He can get into every computer program imaginable even though we have software that supposedly prohibits that. Go figure! ! He also loves to bowl and everyone at the bowling alley knows Jack. He bowled for Special OIympics for the first time this year and had a blast. He loves music and dancing, too -grabbing us up when he hears a song he likes and demanding we dance with him.

Jack also had the fortune of meeting several of the Carolina Panthers players this year and has a #55 Dan Morgan autographed jersey - autographed by Dan himself as well as several other players including our own local hero Ricky Proehl. He and the rest of the family were on TV trying to get to the Super Bowl this past year. We didn't make it to Texas but did throw a great party here.

To us, Jack is Jack. We refer to him as our little angel -with retractable horns. He learns things a little slower than other children, but he is just as happy and proud of himself as they are when he accomplishes his goals. He loves for us to clap for him. He hams it up for the camera just like his big brother does. He and his brother sword fight and play with all sorts of non-age appropriate toys. Oh well. But one of the most satisfying things we hear is when Fox puts his arm around Jack and tells his friends "This Is Jack. He's my baby brother." You can hear the love in the way he says it, and that says it all for us. Jack is part of our family now. To not have Jack as part of our family is unimaginable. He's the glue that makes us a stronger and better family. Pettiness is suddenly so apparent and fruitless, but so easy to get caught up in. We choose to be positive and happy .God, Jack, and Fox help to show us the way.

Call us. We can tell you the up side of Down. 336-778-1824 Ron, Phyllis, Fox, and Jack Rice Clemmons, NC