Ricky
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"Vi tror ikke, at dit foster er levedygtigt ... du skal alvorligt overveje at afslutte graviditeten. Du er nødt til at forberede jer på at vælge et navn og en gravplads ..."
Dette er, hvad vi hørte, da vi fik resultaterne af en fostervandsprøve 36 uger i begyndelsen af oktober 1995. Vi blev informeret om, at vores barn havde en genetisk defekt - Pallister-Killian syndrom Tetrasomy 12p. Vi husker, at vi hørte, at vores barn sandsynligvis var misdannet med en diafragmatisk brok og havde nul chance for at overleve fødsel. Vi fik vist alle tænkelige worst case-scenarier for de tilgængelige oplysninger dengang, citeret den "udfordrede" spædbarnsdødelighed, i betragtning af de umulige odds for at opdrage et sådant barn, advarede om den uudholdelige følelsesmæssige og økonomiske byrde, vi ville stå over sammen med den dystre forudsigelse at vi ville blive udstødt af familie og venner, hvis vi valgte "... at få dette barn."
To uger senere, kl. 9:39, ankom Ricky via kejsersnit. Fire uger senere blev han hastet til ER med opkastning og høj feber ... han havde bakteriel meningitis. Der var ingen tilgængelige vener, der kunne modstå den langvarige IV-brug, der kræves til administration af antibiotika. Ricky havde brug for en operation for at indsætte et broviac-kateter for at modtage antibiotika, men lægerne ramte en mur, fordi hans esophagomalacia forhindrede enhver intubation. En specialist blev skyndt ind med håb om, at han kunne løse dilemmaet og redde Rickys liv ...
.... nu her er vi 2 måneder væk fra Rickys 18-årsdag, og hans liv har været bemærkelsesværdigt. Ja, der var masser af hårde tider - at overleve et dusin aspirationspneumonier, fordi hans epiglottis ikke lukker helt rigtigt; anfald af anfald i midten af hans sjette år; tandrekonstruktive operationer hvert andet år fra hans ottende fødselsdag; halvårlige beslag til en blød Boston-rygbøjle for at afholde kyfosen fra at accelerere; for nylig blev der udført en bronkoskopi for at finde ud af, hvorfor ekstubationer har været så vanskelige - han har en oval formet spiserør; og alligevel med alt dette foregår, er hans livserfaringer misundelsesværdige.
Ricky er hurtig til at smile, elsker sin musik og har en mavegrin, der er mest smitsom. Bedst af alt elsker han at rejse. Han fløj til Las Vegas for at se sin søster blive gift i varemærket Little White Chapel lige på stripen; hans næste flyvning var til San Diego for hans ældste brors bryllup ved solnedgang på Stillehavskysten; 8 måneder senere var han på vej til San Francisco for sin ældre brors bryllup med løftet om en svævebane. (Vi bor i Pennsylvania). Han fløj til Big Island på Hawaii og så det sorte sand første hånd, før han satte kursen mod Maui for at vise sin charme til de lokale damer i Luau i Lahaina.
Han har ferieret et halvt dusin gange i de ydre banker, besøgt Poconos og Williamsburg Virginia og senest føjet Virginia Beach til sit ferierepertoire. En af hans mest spændende udflugter var imidlertid til hovedstadsbygningen i Harrisburg, hvor Ricky både var vidne og deltager i vedtagelsen af statsresolution 252 *, der anerkendte 4. december som Pallister-Killian Awareness Day. Ricky sad direkte på senatgulvet til podiets umiddelbare højre side, da resolutionen blev præsenteret, stemt om og vedtaget. (Tjek billederne på senator Greenleafs hjemmeside.) Ricky 17-års fødselsdagshøjdepunkt var en solotur i en varm Red Corvette med toppen selvfølgelig, koordineret af sin tante Betty og drevet af sin onkel Drew. Hans gudfar savner aldrig sin fødselsdag, og hans gudmor kalder på ham hver uge. Hans bedstemor holder ham i sine daglige bønner, og hans niecer og nevøer nyder alle at lege sammen med onkel Ricky. Hans fætre fra Sicilien besøgte sidste år, og nu vil de have ham til at komme ud på besøg. Hvis vi kan finde logistikken ... måske er et krydstogt til hans 20-årsdag den måde at få det til at ske!
Fra det øjeblik Ricky blev født, lovede vi os selv, at vi ville lade Ricky leve sit liv fuldt ud - ingen forventninger og uden begrænsninger. Vi ville ikke beslutte for ham, hvad han kunne eller ikke kunne, og ikke lade ham prøve på grund af det. Han fortsætter med at forbløffe os med sin livslyst, og selvom han aldrig har talt et ord, kan han se lige ind i dit hjerte for at fortælle dig "Jeg elsker dig". Vi er glade for, at vi lyttede til vores hjerter og valgte at give Ricky liv.