Stirling
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Stirling föddes 10 december 1996 i Honolulu Hawaii. Sommaren 1996 var jag gravid med mitt första barn. Jag var väldigt upphetsad. Vi hade ultraljudet gjort efter fem månader och jag fick reda på att jag hade en pojke. Vilket lyckligt ögonblick för oss! Men tekniken agerade konstigt och bad om att en doktor skulle se på bilderna i sig. De sa att de skulle vilja att jag skulle komma tillbaka för en ny titt om några veckor. Jag blev orolig och kunde inte föreställa mig vad de såg. När jag kom tillbaka sa de att vätskesäcken i mitt barns huvud såg stor ut och att de skulle vilja planera en fostervattensprov. Vi gjorde testet på 7 månader och väntade på vad som verkade för alltid för testresultaten. Visar sig att mitt urval måste skickas till USA, eftersom inga resultat kunde fastställas här på Hawaii. Så småningom fick jag veta att min son hade Pallister Killians syndrom. Jag fick höra att det var väldigt sällsynt och att de flesta barn fortfarande föds eller dör inom sitt första leveår och jag fick möjlighet till abort på sikt. Vi blev förkrossade över nyheterna och diskuterade dem något. Vi bestämde oss för att om den här lilla killen ville leva, skulle vi ge honom alla möjligheter att göra det och att vi skulle älska honom oavsett vad.
Så när tiden kom hade vi runt 10 läkare och en kapellan i mitt förlossningsrum som väntade på att denna mycket ovanliga bebis skulle födas och att ge sista riter vid behov. Det var väldigt deprimerande måste jag säga. Jag var inte alls glad. Efter 26 timmars arbete kom min ljusa pojke till världen men jag fick inte träffa honom. De tog honom genast bort. Jag fick veta timmar senare att han hade levt. Gud är god! Några dagar senare fick jag äntligen träffa honom i PICU. Han var under en huva för att han var gulsot och fick tubmatning. Han levde! Han såg väldigt ut som ett PKS-barn, hans ögon var vida från varandra och hans hud var genomskinlig. Hans ben och armar var mycket korta och han hade ett hål där svansbenet var, men han var min och jag grät första gången jag höll honom. Han var så ljus att jag kallade honom Stirling. Så sätter vår resa.
Stirling har haft en lycklig hälsosam barndom för det mesta. Han diagnostiserades som kortikalt blind vid 1 års ålder. Det verkar komma och gå så han bär också glasögon. Det bestämdes att han var döv vid födseln, men sedan har bestämts kan han höra höga ljud och höga tonhöjder och har använt en cochlear hörapparat. Han tuggade aldrig sin mat så all mat var alltid renad. Han är inkontinent till denna dag. Han började få anfall vid 3 års ålder. Han förskjuter sina höfter mycket. Han gör det "froggy". Jag tror att han gillar det! Så han har haft två operationer att reparera men de varade inte så vi har gett upp dem. De är inte värda smärtan om han inte störs av dem. Han gör också ballerinasaken med fötterna så han har också haft två operationer för att förlänga Achilles senor för att hjälpa till med att stå. Han har haft många öroninfektioner eftersom hans hörselgångar är väldigt små och har fått in rör med några år. Han har haft underbara lärare och lärarhjälpmedel genom åren. Han har alltid varit en lycklig pojke. Under tonåren har han haft ett antal lunginflammationer, en trakeotomi, ett G-rör infört och måste ha syre.
Han har blivit medicinskt ömtålig men han ler alltid och i gott humör. Han är älskad och han vet det! Han har 2 bröder i åldrarna 13 och 11 och en lillasyster i åldern 2 år som han får veta vem som är chef på regelbundna baser. Han är trots allt storebror.