My blog has a wide range of topics….but all relate to my life and is kind of my diary…when something hits me hard I usually post my feelings regardless…..
Tonight one of my sisters called me to tell me that two of my nephews ages 10 and 11 were asking to talk to me….these sweet boys were born with a very rare genetic disorder “Alport Syndrome” When I learned of their illness a few years ago, I had a fund raiser to bring them to Florida so they could experience the ocean, see a sunset, and Disney World before the inevitable happens. We bonded our hearts during this time that no one can ever take away.
While on the phone with them tonight, I told both that I loved them so much “both sighed and said “I know”, nothing more needed to be said…but I told one that he “had my heart”….he replied “Aunt Booie, I don’t have your heart”….I explained…baby yes you do honey, do you know what that means? He said no….so I explained that means “when you love someone so much and can’t be with them, they keep your heart of love”….he replied “I didn’t know that, you have my heart too then”
My love for them is so deep….why the hell can’t there be more research for rare disorders….these babies are so very special…..
Gotta love the kids, they can really touch your heart sweetie
They have my heart in a great big pile of slobbery globbery goo! Although I am so happy I brought them here to Florida for Disney, the beach and all out fun about 5 yrs ago…..I am hoping to do it again soon. They remember it and know how much I love them….they keep begging to come back by making comments like “Aunt Booie, can we pleeeese come sleep on your couch?” With their medical condition, it is touchy putting them on a plane by themselves….my family are the ones who have to make the commitment to bring them here….that is yet to be seen.