**I posted this on my myspace blog quite some time ago, and that ones private...i thought id share with everyone, being Down Syndrome Awareness Month and all =)** My sister (in law…but I don't go by that!) wrote a paper for one of her classes a while back about Jewells…and I came across it as I was cleaning my room, and just thought id share!! It can be hard to read sometimes, because it takes me back to when we were so full of fear of the unknown, and the doctors knew very little about her diagnosis...being that it is a RARE form. The Jewell of My Life The perfect family is all my sister, Jessie ever wanted; her high school sweetheart for a husband, a nice house, and beautiful children. A dream from the time she was a little girl, until it became reality. She had every thing she ever wanted a wonderful husband, a nice house, and she was now pregnant. Overcoming adversity and odds was only the beginning for my sister Jessie when she became pregnant. The day Jessie and her husband Bud found out she was pregnant was a miracle in itself for the married couple. They knew it was special right from the very start. They felt an overwhelming sense of peace, like during a Sunday morning drive. Being pregnant for the happy couple was a beginning of a whole new way of life. The very first ultrasound was quickly approaching and at 18 weeks the day finally arrived that they would see their beautiful baby for the first time. Seeing their baby grow inside Jessie's womb was one of the most important days of their lives. Just as all parents, Jessie and Bud wanted a healthy baby, but unfortunately bad news came forth. Baby Bigelow was diagnosed with a choroid plexus cyst of the brain. A choroids plexus cyst is a pocket of spinal fluid in the back of the head near the neck. This was one of the first signs that Baby Bigelow was in for a rough ride. The doctors advised the Bigelow's to come back in four weeks to keep an eye on the cyst. This was the first time that they had heard the ominous words of downs syndrome. Although, the cysts are not strictly associated with downs syndrome, they are one of the warning signs doctors look for in ultrasounds. The second ultrasound at 22 weeks revealed a bitter sweet moment for Baby Bigelow; the cyst was gone, but another problem arose. Hydronephrosia is another word now entering Baby Bigelow's medical chart, also associated with downs syndrome. What is Hydronephrosia we all wondered? It is fluid around the kidneys. The doctors determined the chances of this baby having downs syndrome are very possible, but not entirely, so they instructed them to return in four weeks for another ultrasound. During the mean time, the doctors wanted Jessie to endure a blood test and or amniocentesis in order to more clearly pinpoint the problem. Jessie and Bud decided that the risks were too high and if there were something wrong with their baby, it was nothing they could not handle. Therefore, four more weeks passed and at 26 weeks the Bigelow's entered their third ultrasound, and to their surprise and to the doctors, the hydronephrosia had disappeared. This was a great blessing for the Bigelow family and with the doctor's consensus; Baby Bigelow would be a "normal" healthy baby girl. The birth of Baby Bigelow did not go as planned as most births do not. The gestation period was normal at 39 ½ weeks, and then began the third hurdle the Bigelow's were forced to endure, labor. As the family gathered at what would be a beautiful new addition into our family, things yet again became complicated. Jessie was in hard labor and pushing with no progress for three hours. The turn of events was Baby Bigelow's heart rate dropping at an extremely low rate; consequently, the doctors opted for an emergency c-section. After a nerve racking, nail biting 45 minutes, the Jewell appeared. Her eyes shined as bright as the northern lights. Her face glowed like the morning dawn. She had arrived, Natalie Jewell Bigelow on Natalie Jewell Bigelow or "Jewell Bear" as I call her was the center light force of our family. She had overcome odds of a terrible and potentially life threatening diagnosis. She smiled, laughed, cooed, and grew at an unbelievably normal rate. On occasion, Jessie would notice an unusual look in Natalie's facial expressions. She periodically stuck her tongue out for hours at a time creating a "downs syndrome" look. The pediatrician reassured the Bigelow's that Natalie was "normal", but because of the ultrasound results decided to run the genetic testing for downs syndrome. The life altering results were finally in two weeks later and Natalie Jewell was diagnosed with Mosaic Downs Syndrome. Mosaic Downs Syndrome differs from conventional downs syndrome in that only a portion of her chromosomes are affected with trisomy 21 (downs syndrome). Trisomy 21 is the technical and medical term for downs syndrome. Of the 30 cells tested in Natalie, only 9 were affected with trisomy 21. This diagnosis was an eye opening experience that the Bigelow's never hoped to entertain. The geneticist told the Bigelow's that Natalie at the very least would be mildly retarded. Against all odds, my "Jewell Bear" proved all the doctors wrong thus far. Every test at all her well-baby checks is at or above "normal" levels as compared to children without downs syndrome. Compared to children with downs syndrome, Natalie scored off the charts in highest regard in all aspects. Natalie Jewell has since crawled by 8 months, walked at 10 months, and is currently a talking toddler at 16 months. Natalie is treated as "normal" as possible, but also given every opportunity to learn everything she can. Natalie is enrolled in an early intervention program that encourages and challenges her to learn at her own pace. She has a therapist that comes to the house for weekly visits to make sure that she not only meets, but exceeds her learning potential. She also attends classes once a week at a school for children with special needs. Natalie is a thriving, happy, soft hearted toddler with many mountains to climb. The word perseverance is at the top of the Bigelow's family vocabulary, and words that label: for example Mosaic Downs Syndrome, diagnosis, "normal", and handicap are rarely spoken. Natalie was not given a disability, but a gift from god to teach others how to survive the hand they are dealt. My "Jewell Bear" has taught me to think twice before using the word "normal" because she is anything but "normal" and everything but handicapped. People do not realize the time it takes to build up a child with the mindset that every door is open instead of how to open every door. It is amazing how the education of a disease or birth defect can bring a family together to join the fight against the misunderstandings and misconceptions. Jewells is now 2 ½ years old. She has yet to fall behind in anything; Although her speech needs some help that too is coming along. Every day she seems to speak a new word, we have taught her sign language to help in that area. Oh, and yes she did get an A on this paper! Wow...told you i posted this some time ago...jewells (jewells = natalie, she gets called all kinds of things! jewell is her middle name, and when i was prego we didnt have a first name for her til she was almost here, so she was referred to as jewells, and it stuck!) anyway...she is now 4.5 years old and in her second year of preschool! shes doing really well...speech is still an issue, and chances are it always will be...but you can finally have a conversation with her, she has almost completely stopped using sign language (thats bittersweet!), she can sing about 90% of a handful of songs, she knows all her colors and shapes, her abcs, counts up to 30...and much much more...altho she knew alot of that before she even went to preschool! she is my living miracle and i thank god every day for her!
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