By Degrees

My Dad just had his annual assessment with his neurologist. The doctor is a really neat guy, who has cared for my Dad for quite a few years. He is retiring, and that’s challenge, for he has walked with my Dad through the difficult stages of this disease through his annual evaluations. He understands, and it is hard to know if we will find that again in a physician.
 
In his assessment, he said that Dad is in the “final” or “last” stage of Huntington’s disease. That is not a surprising statement. I’ve seen what has happened to Dad over the years. I have seen how much he has changed in the last two years. I’ve heard about what my Mom has dealt with as she had done the best she can to care for him. I’ve heard it and I’ve lived it and every experience we have with him causes more grief, a little more loss and a little more dying. Just hearing those words did it again. It is a fresh reminder that the end is coming.
 
Sometimes I talk about death somewhat casually, because all of us are going to experience it. I know that it is inevitable and unavoidable, and honestly, who would want to live forever in this fallen world? And, I also know that I don’t want my Dad to suffer a long-drawn out battle with his body and his dying brain. I do long for him to be whole again, because I do believe that there is something after this life. I do believe he will not be in chains to this devastating illness until his death and then it will all end. I believe in his restoration after life on this earth is through. This belief I have does give me some hope.
 
But, all that being said and done, I can’t escape that he is in fact my Daddy. I love him so very much. I struggle with the sense of loss yet again, over and over. Each little bit that he is unable to do, say, or be just causes another stab of pain. And now it’s been stated that we are facing the end. How do I feel about that? Suddenly extremely and awfully selfish! I want the end to come for his sake and I want it postponed for my sake. And so, tears fall as I cry all over again for what we have lost.
 
Maybe that is the clincher. Every time we lose another part of him, we grieve all over again because of what we have lost since the beginning. It’s like this huge ocean of grief that just hits and bowls you over once in a while. We lose him by degrees, but we feel it all completely—over and over and over again.
 
I want to be with him again. The last month we had together was so wonderful, but I feel like I need to soak up more seconds, minutes and hours before his time on this earth is over. I am going to do all that I can to make it happen. It will be expensive. I won’t have a long time to take off, away from work and from my family. Since it will be short, it assuredly won’t feel like long enough. I will also be purposely forcing myself into more grief and sadness by his side. But as I’ve said, he is my Daddy. I wouldn’t have it any other way.