Connections - Down Syndrome Guild of Greater Kansas City

DSG Mission:The Down Syndrome Guild ofGreater Kansas City is a 501 c 3nonprofit organization whosemission is to provide support andresources for individuals withDown syndrome and their families.DSG seeks to provide the entirecommunity with information andeducation to broaden awareness andfoster positive attitudes regardingpeople with Down syndrome.Kristin BechtelKansas City, MissouriJo Ann ButaudShawnee, KansasBrian CowleyParkville, MissouriTerry LeeOverland Park, KansasMarleen LeonceKansas City, MissouriJawanda MastOlathe, KansasBridget MurphyLeawood, KansasTravis PalangiOlathe, KansasJoe RoosKansas City, MissouriScott ThompsonLeawood, KansasDoug WagerKansas City, MOTom WagstaffMission Hills, KansasConnections is a bi-monthly publication ofthe Down Syndrome Guild of Greater KansasCity. Please contact the office at (913)384-4848 if you have any questions aboutthe contents of this newsletter or would liketo contribute an article.Disclaimer: The information provided is done sothrough a variety of sources including names providedby members of DSG, networking, referrals by professionals,other agencies, mail advertisements, etc. DSGcannot attest to the quality or qualifications of the individualsor organizations described. We encourage you tobe a wise consumer and ask questions in order to makeyour own independent evaluation of utilizing the servicesdescribed. We share information about researchprojects but in doing so, it is not reflective of any type ofendorsement.On March 20 th , 2008 God blessed our familywith a beautiful daughter Sophia. Sophiamade a grand entrance coming into the worldlooking like a boxer on the losing side of a longhard match. My wife and I only got to seeSophia for a brief moment before she waswhisked off to the neonatal intensive-care unit.No, it can’t be…there must be a mistake…thiscan’t be happening to us…what are we goingto do??? These were some of the manythoughts running through my head when thenews was given to us that Sophia had Downsyndrome. It was a very surreal moment. Neithermy wife nor I knew anything about Downsyndrome and I could only think about how ourlives were going to be very different from whatwe had dreamed. I remember family andfriends telling us, “God wouldn’t have givenyou this beautiful child if you couldn’t handleit”.I am a little embarrassed to admit this but atthat time I wasn’t as sure about myself as familyand friends were. I had doubts about beingable to rise up to the challenges we were goingto face of raising a child with special needs. Iwas relieved to find out later that the emotionsI had were normal for parents of children withDown syndrome. And, within a short period ofhaving Sophia in our lives the doubts began tovanish by an overwhelming realization of howmy family and I are so blessed to have Sophiajust as she is.Sophia has had multiple eye muscle surgeriesto correct strabismus and cataract removal inboth eyes. Before Sophia, I never imagined aneight week old child requiring contacts or whatit would be like to have to put them in hersmall delicate eyes. When Sophia was youngerit was a one parent operation. As she grew andgot stronger it became a two parent operation.One of us holds her down and the other opensSophia’s eye with one hand and gently placesthe contact in with the other hand. Now mywife and I are old pros at it, an acquired skillnot appreciated by Sophia.Everyday we give Sophia thyroid medicine. Theeasiest way to get her to take it is enlisting theassistance of her older brother, Taylor. If he isclapping and cheering, Sophia will eat justabout anything. At times I wonder what wewould do without his help. Sophia absolutelyadores her big brother. When he isn’t home,she walks around the house calling his nameand is determined she is going to find him.“Sophia brings incredible peopleinto our lives. DSG has beenamazing for our family!”By the time Sophia was six months old she hadseen more doctors than I have my entire life.Keeping track of all the resources, doctors,appointments, treatments, events, etc. is initself a challenge. Fortunately I have an amazingwife, Heatherand she diligently put togethera binder to keep track of everythinggoing on. It’s I have no doubt our daughter isachieving the things she is because of the tremendoustime and effort my wife has put intoher therapy and playtime.Sophia brings incredible people into our lives.DSG has been amazing for my family. Theycalled us at the hospital and offered us supportright away. They provide resources, a path ofaction, hope, encouragement and friendship.Over the past few years we have made manynew friends through DSG. It is fantastic to talkwith other parents going through the samechallenges of raising a child with Down syndrome.We love attending DSG events throughout theyear and supporting fundraisers organized byFirst Downs for Down syndrome, especially the“Step Up Walk”. I have been active with Dad’sAppreciating Down syndrome (D.A.D.S.) groupmeetings and have established great newfriendships from it. If you are a new Dad orhave not been to a D.A.D.S. meeting, youshould definitely come check it out.Nothing in life is more enjoyable and rewardingthan seeing your child accomplish a goal ordevelopmental milestone. I can’t wait to seewhat Sophia will accomplish in her lifetime!Submitted By: James Sanders