I was able to FaceTime Caide and his caregiver Olivia today. It was what my soul needed. I was able to talk one on one with Olivia as well for a moment and I asked her a question I've always wondered about regarding the disease that Caide and my sister had. I asked if Caide was aware he has the disease. She thought about it for a minute and then told me that she really doesn't believe that he knows he has it or what he's about to go through because of HDL2. That brings me some relief because I've always feared that my sister was scared of the changes her body and mind were going through. She did tell me that she remembers Camila always being scared for her kids, especially Caide. She told me that she would always bring her pictures of her kids and try to talk about them. It's surreal that Caide used to be someone she knew from pictures to now someone she works with six days out of the week. Olivia says that Caide is very loved and very spoiled. Maybe it's because he's the youngest patient they have but she mentioned several times how much the staff all love him. Caide is very attached to Olivia in particular and just follows her around, wanting to help in any and every way he can. He seems to be doing well but she did say that he is detereoating very quickly. He's losing a lot of muscle and weight. He needs help with everything. She helps him put on his clothes, shower, cut up his food and open all the things for him. I remember right after my sister's viewing I took him to Chick'Fil'A where I had to help him open up the sauce packet because he couldn't do it back then. That's when I knew he had the disease as well. He mostly just says one letter sentences. During our conversation today he really only said yes and no but he did once say 'horse', 'cute' and 'cool' and at the end when we were about to hang up he told me "love you". Olivia encouraged him to say more words in that sentence so then he said "I love you." It was a special moment. I love this kid so much. I'm glad I was able to have this virtual visit and that my kids also joined in and they were showing each other stuffed animals that they love. Caide showed my kids his babies, tiger, puppies and sloth and my kids showed him their babies, stuffed elephant, unicorns, puppies and lego cars.
Caide I love you bud. I'm so sorry you have this awful disease. I love that you have someone like Olivia to be there by your side through this. I wish it could be me. Maybe one day I'll live close enough to regularly visit you before your time here is done. In the meantime I promise to call and FaceTime more now that we have each other's contact information. Love you.. . . I love you.