Summer 2010 - CdLS

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Su p e r Si b l i n g s: Dav i d a n d Mi c h a e lDavid and his brotherMichael, an adult with CdLS,have always had an extremelyclose connection. Since theywere young, David and hisfriends have included Mikein their activities, and as theyDavid and Michaelgot older, the brothers’ bondonly got stronger. “As I grewolder, Mike grew “younger” mentally, and I became moreaware of his needs and how to care for him,” says David.“When we did things together, I made sure that it wassomething he would enjoy doing. We have a very strongrelationship now.”David and Mike still love spending time together, andevery time David travels back home to Western NewYork, they make time to do the things together thatthey both enjoy. “Mike loves to go to Wal-Mart to buystickers. Each time I’m home, this is one of our trips andsince Mike loves ice cream, that’s one of our trips too.It doesn’t take a lot to make Mike happy,” says David, aschool teacher in Maryland.Although life with CdLS has been at times challengingfor his family, it has also brought them closer together.It has allowed them to continually learn from theexperiences they’ve had with Mike, and share thoseexperiences with extended family members and friends.“Mike is accepted by our entire family and friends,” saysDavid. “Mike brings laughter and enjoyment to ourfamily. He is always the life of the party and keeps ourfamily young,” says David. “I feel that our entire familyhas learned so much from Mike about what he can doand not what his limitations are. They have become moreaware of other people with special needs.”David has been an active member of Mike’s life as well asother individuals with CdLS. He has devoted his time tolearning more about CdLS by attending and volunteeringat conferences, meeting other families affected by CdLS,and by getting constant updates from his parents onhow Mike is doing. David is a stand-by guardian to Mikeand wants to be as informed as he can be when he takesover this role. “I always feel it’s important for me to beinvolved with Mike because I need to make sure thatMike has what he needs. When the time comes for meto become Mike’s guardian, I’ll be well informed on howthings concerning Mike are. I am, and will continue tobe, an advocate for him.”WELCOME NEW FAMILIESArizonaBlair and Sydneyand daughter Cambria,born March 30, 2010IndianaKatie and Chrisand daughter Coleena,born March 17, 2008New MexicoEvanthia and Dannyand son Sebastian,born December 23, 2004UtahStephanie and Tupakkand daughter Siena,born September 1, 2007ArkansasMegan and Kyleand son Kirk,born May 19, 2010CaliforniaTraci and son Jacob,born March 22, 2010MassachusettsLeeann anddaughter Destiny,born July 26, 2009MississippiSusannah and Jonathanand daughter Anna,born May 9, 2010TexasValerie and daughter Alyssa,born August 6, 2009Myra and daughter Aubree,born November 1, 2009Amber and son Sean,born September 8, 2004Sara and daughter Lucy,born December 26, 1998WisconsinCrystal and Shannonand son Landon,born December 6, 2009Reaching Out10www.CdLSusa.org
Gr a n d pa r e n t Co n n e c t i o n sConference Connects GrandparentsThis year’s conference provided grandparents of individualswith CdLS opportunities to meet one another, share stories,understand more about CdLS, and learn new ways to helptheir children and grandchildren.At the Foundation’s request, many grandparents wrote abouttheir experiences with CdLS. Several shared advice, whileothers wrote about how their grandchildren changed theirlives or what it was like the first time they heard “CdLS.”Izzy’s grandmother, Betty, shares her story below.– Izabelle –Grandparents Betty and Jim withgranddaughter Izabelle1-800-753-2357The day my granddaughterwas born, we knewsomething was terriblywrong. She had so manycomplications we had littlehope that she would survive24 hours. My husband and Iboth held our fears in-checkuntil we were alone, thenthe flood dams broke andwe talked the entire night.We are both realists and inour hearts felt that we weregoing to have to start making funeral arrangements. Weasked all the why questions and how were we going to fixthis. Parents are supposed to fix things! We protect ourchildren. We were helpless as parents for the first time in32 years.When I first heard CdLS, I thought okay we can fixthis. We will get the best doctors possible. Then whenthe syndrome was explained, I felt like I entered a darktunnel and there was no way out. I had to be braveand strong for my daughter, but on the inside I wascompletely devastated and lost. I felt all the emotions atonce; Fear, Anger, Helplessness, Hopeless, and Numb.I was emotionally shattered for my granddaughter anddevastated for my own daughter (Carrie). I questionedGod, cursed him out and prayed all the time.Izzy has completely changed my entire family’s life. Sheis the focal point of each and every day. Because Izzyrequired 24/7 care, I quit my job and stayed home withCarrie and Izzy. We took turns watching and caring forher multiple needs. She would quit breathing; neededG-tube feeds every three hours, etc. Carrie and Izzy havelived with my husband and me for the last three-and-ahalfyears.Izzy’s diagnosis has been ablessing to our family. Werealize the importance of everyday life and needs. We are amuch stronger family unitbecause of Izzy. We are a teamand are open and honest aboutIzzy’s complications and future.Her two aunts, who are 20 and22 years old, also participate inIzzy’s care and social needs. She Izzyis their princess and walks onwater. We all work with the reflux issues, bowel, eating,sight, ears, and motor skill issues. We are always tryingnew things.Carrie and Izzy moved to our home in Omaha after shewas released from the NICU in Boston. We supportthem both financially and emotionally. Carrie and Izzyhave a huge extended family that also supports thememotionally. They all are constantly celebrating with usall the special moments of Izzy’s accomplishments.I would tell other grandparents that it is OKAY to bescared and angry, but it must be short lived because thereis a lot of work to be done and little time for self pity. Iwould tell them to never give up, be prepared to fight fortheir grandchild’s rights and needs. I would tell them tolisten to their instincts and never stop asking questions ortrying new ways to do things until you find the one thatworks. Lastly, I would say get on the Internet and contactthe CdLS Foundation, other parents and grandparents.Betty, Izzy’s grandmaIowaSend your Grandparent Connectionssubmissions to communications@CdLSusa.org or CdLS Foundation Attn:Alexi, 302 West Main Street, #100, Avon,CT 06001.11 Su m m e r 2010 2009
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Summer 2010 - CdLS

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