Memory;;

Learning to go with the changes isn't the easiest of tasks. When we first started having some of this memory loss I thought it was me stating things to Jordan and him just not listening to me and it frustrated me. I quickly started to see this happening more and more and we saw our neurologist who confirmed that yes it is memory loss that we are seeing and no there isn't anything that can be done to stop the progression its part of his disease. On MRI's with kids with GAN they see what they call white matter over time that increases and I didn't really know what it was going to do to us. Every case is just so different and in our case we are seeing memory loss or comprehension loss. Jordan asks I respond and he stop mid sentence to say "I love you mom" instead of finishing his sentence and and I ask him finish what you were going to say but he says I forgot. I have to repeat so many things more than once and just keep repeating them until he stops asking the same question. Him loosing his memory really makes me sad. I never want him to forget me. I never want him to forget his beautiful life. His doctor asked that we make sure we make him feel comfortable at all times by reminding him that he is safe and loved at all times so this is something that we will start doing it. I cant say that we are a big family but the little family that we do have I hope they realize that now more than ever they need to make sure they spend time with him. I hate that I even have to write that but lets be honest we don't all come from the perfect family and sadly some families aren't supper united until something bad happens and in my opinion thats pathetic. I like to be very honest about many situations and well family not being there in these kinds of situations is sad. Anyway back to Jordan. I hope that Jordan has a couple more years with us that he remembers and has beautiful memories. This one was another tough one for us because sadly there is nothing that can be done about it other than just let it happen and as I am not okay with that there are many things with this disease that I have to accept and be okay with even if Im not. I hope everyone has a Merry Christmas! This year we were blessed to be part of Adopt A Family and we had a great family come and make the kids Christmas extra special and they have so many gifts!