This has been a very emotional week for me. It is the one year anniversary of saying goodbye forever to my Daddy. It has brought out a lot of emotions in me that I don’t think I realized were there. It has made me think about things that I don’t want to think about. It has left me sad and longing for more time. More time with him. Each day that goes by does not get easier, it gets harder. It is a permanent reminder about the fact that my Daddy is not here. I want him to be here. I am selfish, I want him to hold me and tell me everything is going to be ok, even when I know it is not. I want to hear his voice and laugh, see his smile and listen to his words of wisdom. I wonder if he knew just how much I loved him, how much I admired him and thought he was the greatest man in this world? I do not know how you pick up the pieces when you lose a parent whom you loved so much. I understand now when people say it is like a piece of their heart is missing.
This week has been an especially hard week with Nathan as well. He has been having some pretty intense meltdowns. They can last for a few minutes or for hours. Afternoons are really hard. He has been very agitated and angry. He says things that he doesn’t mean and I know it is all just part of the disease, but it is hard to hear. It is hard to watch our son do things that we know we can’t do anything to help him. The fact that our 11 year old son has Dementia is a fact that is just plain wrong. I have never had any experience with Dementia before and I can tell you it is heartbreaking. It is like the Nathan that was there a year ago isn’t there anymore. Everyday there is just a little more that is missing. It might be ever so slight, but it is happening and I can’t do anything about it. It is ripping me and Jay’s heart out. It is not like Nathan has a cold or a broken bone where we can take him and fix it. There is NOTHING we can do but watch. Watch as this disease breaks our little boy.
We all as human beings have the same basic need to be held. Whether that be emotionally, spiritually or physically, it is a need inside of all of us. I feel a desperate need to be held right now. I have developed a different relationship with God through all of this. I have had my moments of anger and not understanding why this would happen to our little boy, but overall, I feel a much stronger connection with him. I feel like I am being held by God. I think it is only by the grace of God that I am able to get up everyday and do what I do. I feel emotionally held together by Jay. If I didn’t have him, I would not be able to move forward each day. He and I have been through so much together and I can honestly say that I would and could not do this without him. He is so strong, strong enough for the both of us. Physically, I wish I could hold Nathan. He won’t let me though. He does not like to hug me. Every now and then I get the perfect Nathan hug and I wish I could freeze time, because they are truly the best hugs!
If I could give one piece of advice, it would be do not wait to tell someone that you love them. Pick up the phone and tell them. Drive to their house and tell them. Life will not wait. Life is short and precious and you need to let those around you know that you love them. Try to be a little kinder to those around you. We are all fighting battles that not everyone can understand, and the world needs people to just be better to one another.
As always, thank you for loving our family. Your thoughts and prayers are so appreciated. We appreciate the words of encouragement. Please continue to share our story to help spread awareness so that one day there can be a cure for Batten Disease.