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The SOFT Board of Directors Sends Greetings for a Healthy and Prosperous New Year in 2014

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The SOFT Board of Directors Sends Greetings for a Healthy and Prosperous New Year in 2014 The SOFT Times Support Organization for Trisomy 18, 13 and Related Disorders February/March/April 2014 The SOFT Board of Directors sends greetings for a healthy and prosperous new year in 2014. 2014 SOFT Conference: July 9-13, Norfolk, Virginia Persistence and determination alone are omnipotent.- Calvin Coolidge SOFTLY SPOKEN Kris Holladay, Founder “I REMEMBER” With tears in my eyes, I took my doll convince me to my mom and told her Cathy was not to love my broken and I didn’t want her any little doll! I was raised in a loving family with six longer. Mom took me and Chatty How could I Cathy in her arms and rocked us have known children. I am the fourth daughter of Kris & Kari Deann, five girls in a row and the youngest of both. Then, she stood me on my feet, then how her the six is my one and only brother. My straightened my nightgown, and words would change my life forever! memories of Christmas mornings are handed my doll back to me and said, Fourteen years later, Hal and I were filled with happiness. With five daugh- “Someone needs to love this little doll expecting the birth of our second child. ters, I remember our family Christmas and I think you are just the one!” I We were already the happy parents to tree would be piled high with lots of looked at my mom’s tender eyes and our darling red-headed two-year old, “girly” stuff! One Christmas memory will then back down at my broken doll. Tricia. Waiting by her phone, was my remain forever in my mind and heart! I Somehow, my mom’s words touched mom. As with all her newborn grand- was eight years old and our family lived my heart and I started to feel some- children, she would come and help the in the small town of Holbrook, Arizona. thing special for this little broken doll. young family. The call finally came and Under the Christmas tree were all sorts Funny, but I never noticed how while my mom was in-flight to Oakland, of baby dolls for all the daughters and strange her voice sounded after that California, Hal and I had were told the they filled the room with the smell of or at least it didn’t bother me. Even unbelievable – our newborn daughter, plastic equal only to a Firestone tire when school resumed and I took my Kari, was born with a genetic disorder showroom. I had asked Santa for a doll to school for show & tell, the (Continued on page 3) “Chatty Cathy” doll. This amazing little laughter from my classmates couldn’t doll could “talk” by pulling a string that came out from her back. You would pull the string and as it retracted back into the doll, you could hear words and phrases, thus “Chatty Cathy” would chat. On this particular Christmas morning, I went sleepy-eyed to the tree and with delight, I found the long waited for “talking doll”! With great excitement, I lifted my “Chatty Cathy” up and em- braced this very wanted doll. I knew I would love this doll forever! I carefully pulled the string and anxiously waited to hear my special doll’s first “words”. My parents and sisters watched and listened in silence and excitement to hear what Chatty Cathy had to say. But, the sound that came from my little doll was so jumbled and strange and no words could be understood! It sounded something like, “...irk ourk ... Irk...ourk” I pulled the string again and again with the same results. I tried to fix my doll, but Chatty Cathy could not chat! Lewis Sisters Christmas, circa 1958 February/March/April 2014, The SOFT Times, Page 2 The work goes on, the cause endures, the hope still lives, and the dreams shall never die.-Edward Kennedy “I REMEMBER” Kris Holladay, Founder (Continued from page 2) darling daughter, Kari! I began to feel unconditional known as Trisomy 18. The doctor went on to explain that with love! Amazingly, Kari outlived all expectations placed this condition she would be severely physically and mentally upon her and this incredible little girl lived happily and handicapped and would probably live only a few short weeks or lovingly for almost 11 years! months. Mom arrived to find Hal and I devastated and our hearts Sixteen years after Kari died, my mom passed from broken. When mom first saw this tiny newborn granddaughter, this life to the next. I found myself trying to imagine my she held her tenderly and whispered sweet words in her tiny ear. mother and Kari seeing each other again. I like to think Because the hospital staff stated there was “nothing they could I could hear Kari say, “Welcome home, grandma. I’ve do that couldn’t be done at home,” Kari was sent home with us to missed you so much!” die! Mom helped me write a list of all the things we wanted to share with our newborn daughter. My list included things such as put- ting lotion on her tiny body, singing to her, tape-recording her cry, putting a pink bow in her hair, etc. As I completed each one, I would cross it off my list. Once my list was completed, every- thing else became bonus time and days. The first few nights at home were filled with fear and anxiety! My mom knew I was exhausted, so she took the “night shift”. She courageously sent me to bed for a restless sleep while she carefully watched over Kari. Throughout the night, mom would bring Kari to me for her tube feedings and then I would go back to bed. Just a day or so later, I recall feeling overwhelmed with sadness by the thoughts of Kari’s death. I told mom I was scared to truly love this baby girl! I was afraid that her life and death would hurt too much and the pain would be too great to bear! Just as in those many years before, my mom took me in her arms and rocked me while I cried for the baby that would never be! Then, she tenderly looked into my eyes and said, “Someone needs to love and care for this little girl and I think you are just the one!” From that moment on, I felt something special for our Lewis Sisters, circa 1960 SOFT Mission Statement SOFT is a network of families and professionals dedicated to providing support and understanding to families involved in the issues and decisions surrounding the diagnosis and care in trisomy 18, 13 and other related chromosomal disorders. Support can be provided during prenatal diagnosis, the child’s life and after the child’s passing. SOFT is committed to respect a family’s personal decision and to the notion of parent-professional relationships. Lewis Sisters, circa 1961 February/March/April 2014, The SOFT Times, Page 3 All the art of living lies in a fine mingling of letting go and holding on. - Havelock Ellis President’s Corner by Barb VanHerreweghe Dear SOFT Families: also update us on surgeries your chil- She had a day full of the movements The holidays are over and we are dren have had. It is so important to they were able to view. She has now moving through the new year. There have them in the surgery database so been put on Clonazepam beside her are so many exciting things happen- other families may be able to contact Keppra to see if that will stop the ac- ing this year to look forward to. As we you if their child also needs that sur- tivity. As always when it seems things approach Valentine’s day, there will gery. You can update that informa- are going well she always gives us a be the opportunity to share your tion online. Don’t forget that even wake up call. We are hoping this will child’s photo. In the month of March though your membership is FREE, we work. She has been super happy and comes Trisomy awareness month. still need you to renew each year so until the seizure activity she has been There will be suggestions that we can we have the updated information on pretty healthy recently. This is the all participate in to help raise aware- you and your family. worst time of year for our kids and ness in our community and our local Conference 2014 with the flu season upon us I pray that hospital. Make sure you go to the Conference is quickly approaching. each of our children had their shots website at www.trisomy.org as well July 9-13th are the dates you need to and will continue to have good health. as to the SOFT facebook page to put on your calendar. Did you know Nicholas Wright follow what is happening in the month. you can make your reservation now I am sure most of you heard about Do you have ideas of what we can do so you get a room in the saved room the loss of Nicholas Wright who had to raise awareness? Let us know block. Just call the Sheraton Water- full Trisomy 13. Nick has been with your ideas. Do you want to share side Hotel in Norfolk, VA. At 757-622- us so many years it is hard to believe information about SOFT? Go to the 6664. The SOFT rate is $115. You that he is walking with the angels and website where you are able to print can also go to the SOFT website and many of your children.
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