Jessica

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Jessica er en sand gave fra Gud. Jeg var 22 år gammel, i 1993 og havde allerede en stedsøn, der var 4, det var ligesom han var min. Så da min kone (på det tidspunkt) blev gravid, havde jeg allerede en dreng, og alt, hvad jeg ønskede og ønsket mig, var en lille baby pige. Som enhver anden far ville jeg have, at min lille pige skulle forblive min lille pige for evigt. På mange måder fik jeg lige hvad jeg bad om.

Jessica blev født den 18. november 1993. Hun havde vanskeligheder ved fødslen og blev på hospitalet et stykke tid. Hun kom hjem lige før Thanksgiving Day. Vi vidste, at der var noget galt, og testen var i gang. De lod os komme igennem ferien, før de kastede bomben på os. Vi var heldige og fik en hurtig diagnose (i modsætning til mange andre med dette syndrom).

Jeg var sur på verden i lang tid om, at mit barn havde PKS. Folk ville fortælle mig ”Undskyld” eller “Der er en grund til alt.” Det hadede jeg. En dag hørte jeg en klog mand i radioen tale om sit specielle barn og om, at ”der er en grund til alt”. Han sagde ”Som forældre, hvis der er en grund? Ville det være godt nok? ” Nej "Ville det ændre noget?" Nej. Jeg voksede meget den dag.

For omkring 7 år siden handlede jeg med Jessica, da en dame, som jeg aldrig har mødt før, så Jessica og kom lige op til hende og begyndte at tale med hende. Denne dame vidste, at Jessica og Jess havde rørt hendes liv. Jeg fandt ud af, at hun var forælder til en skolekammerat til Jessica. De ting, hun fortalte mig, forbløffede mig. Det var da jeg indså, hvor mange mennesker Jess har rørt ved.

Jeg ville ønske, at jeg kunne fortælle dig mere ud fra Jessicas perspektiv, men Jessica kan ikke tale, selvom hun vil rive dit øre af og synge dig en sang. Nogle gange glade og nogle gange triste. Hun har altid været rullestolbundet. Elsker at være sammen med andre børn. Elsker at gå i kor og band i skolen. Jeg prøvede at lære hende nogle grundlæggende tegn i en tidlig alder uden svar. Hun er blevet sat under anæstesi så mange gange, at jeg mistede for mange år siden omkring 70 eller 80 gange for ting som hofterekonstruktion, flere maveoperationer, komplet rygmarvsfusion, mastoid (øreoperationer) og øjenmuskler bare for at røre ved et par.

Jessica er den mest skrøbelige, men den stærkeste unge person, jeg nogensinde har mødt. Hun har gjort mig til den mand, jeg er i dag, og jeg takker Gud hver dag, at han tillod hende at komme ind i mit liv. Jeg håber at møde andre PKS-børn, jeg vedder på, at de er ligesom min Jessica, stærk, smuk og modstandsdygtig.