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Carter's Secret



Sometimes I am really taken back by things that Carter says. Whether it is something gross, funny, rude, or sweet...I am always in for a surprise with him. Tonight, I was in for an even bigger shock! He was playing in his room and I was picking up some clothes in our room, just a typical night. He insists that he has to tell me a secret, so I bend down for him to tell me and he says, "Prader-Willi." I didn't even know what to say. I asked him what made him say that and he said he didn't know, he just felt like it. I tried to ask more questions like, What is Prader-Willi, or when did you hear that word? But he just blew it off and didn't have much else to say. I told him Cade has Prader-Willi and he asked if he has been having it. I said Yes, he was born with it, and then he went on to asking when Cade would be old enough to fight him. lol, Go figure! It is obvious that he hears it being talked about. His ears hear everything! I just am still wondering what made his little brain think of that. Do I focus SO much energy and time on Prader-Willi that my 3 year old thinks about it and wonders. It was just the weirdest thing. He said it so perfect and clear in my ear. It just makes me stop and think of the past and present. How much things have changed for our whole family in the last year and where we are now.  Cade will no doubt get more attention, which can cause challenges. Carter is very demanding of attention now and he will even flat out tell you that he needs some attention. :(
I am hoping to find some balance sometime soon for Carter's sake.




On another note, Carter competed in his first Triathlon this morning! It was the cutest thing ever. He got off to a slow start with his swim, but he finished strong! He was so proud, and so were we! :)


Comments

  1. Beautiful! I can imagine you must feel pulled in all sorts of directions when it comes to giving Carter and Cole the attention they both need. I don't know much about you beyond a few swimming lesson sessions, but I gather that you are a strong, driven woman and fantastic mother. You seem to be so involved in gathering all the information you can on Cade's condition and so motivated to raise awareness. Your boys are really blessed to have you. I love your positive energy. Your boys are precious!

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  2. Amber, Thanks so much for the kind words! Cade has taught us so much about what life is really all about. Staying involved and on top of things gives me some since of control back that PWS has taken away from me. We will have to stay in touch, maybe get the boys together. :)

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