I know it has been much too long since I last posted anything about my struggles with this monster, a.k.a. Huntington's Disease. Dad recently got pneumonia, but through the use of antibiotics he seems to be doing better and his fever has gone away. All that aside though, my current issue is with my family.
Everyone has stated how much they are praying for us, and how much they admire our strength as we go through this struggle. I would rather them go see my dad... Some of them say they will and then they don't, they will gather all the information to get to where he is, and no one ever shows up. Recently more people have shown that they care by actually going to see him, which we all greatly appreciate. I understand that for most of them it is too hard for them to see my dad with Huntington's, but it makes him feel better, it puts a smile on his face, and really brightens his day. I know this is a common occurrence in families with HD, much of the outside family does not want to be a part of it, until it is in fact too late. With the statistics out there in the world, people who have visitors when they are ill, they tend to live longer, make progress and are overall more happy about their situation.
I don't want it to be like it has been lately in my family, that when someone dies, that's when everyone comes out to say all the great things the person did or their memories about them. I want them to exchange what they remember with him, while he is still here. One of my cousins is now understanding all the struggles that we have faced due to this disease. And I greatly appreciate that she is starting to open up to this awful disease, that not only is taking my father from me, but my brother too. It really makes me wonder why everyone is so hesitant to see him. He's not going to give them HD, he just wants to laugh and smile with the people that have been there with him to make such wonderful memories with him all these years.
I don't want it to be too late for our family to see him while he is indeed still with us. Five minutes out of their day to go by the nursing home will make all the difference for him. I want him to know that our family is still there for him and do still care, not that they have forgotten about him now that he is sick...
If you are my family and you have read this, do not take offense to it. I just ask you to please visit him, even if it is only once. Just notice that we may seem strong, but strength is only there in times that it needs to be... We are not always strong, we sometimes cry, breakdown, and ask God why? Like I said before, we would greatly appreciate it.
