We have not posted for a while. After our last post, during the week of Christmas, Eric's breathing was not good and he seemed very lathargic at times. I actually went to bed each night crying thinking he might not wake up. By the following Sunday, he seemed to be so much better. I don't know if something was wrong or he coughed up the problem as he still coughs a lot. I am relieved that he is doing better but still very aware that he could have those problems again as the disease is progressing. This disease is leaving him in a state of pure dependance, which is so hard for all of us.
We have been talking about hospice coming in to help since November at his las ALS clinic appt. We decided we would call them after his feeding tube was put in and we had been trained on using it. Then is was Christmas so we decided to wait til the week after Christmas. They came in last week Monday and we have been meeting the support staff from Faith Hospice in Holland. We have a nurse who comes once a week, a girl to help with personal care two hours a week and a social worker and a Chaplain who came to visit us. It was a bit overwhelming at first, but now it will be what we need, when we need it. Most people think of death when they hear the word Hospice. This is not neccesarily the case for us. They are here to provide care and comfort support for us since Eric has a terminal disease. We know someone with ALS that has had hospice support for some time now. We have no guarantee of tomorrow and are still thanking God for each day he gives us together as always.
Eric is not having a good day today. We have cancelled all of our plans today and he has spent the whole day in the bedroom in his chair. He has been uncomfortable and very tired and weak. It has been a rough week. My sister received news that her cancer has returned and they don't believe it will ever go away. She is starting chemo again next week. Some have said that they think our family is being tested like Job. I have just read the beginning of Job again in my Bible study this week and I don't believe anyone on this earth has been tested as Job has or responded as he did. After his animals, servants and then his children had been killed all within moments of eachother, he responded in Job 1:20-21:
At this, Job got up and tore his robe and shaved his head. Then he fell to the ground in worship and said:
"Naked I came from my mother's womb,
and naked I will depart.
The LORD gave and the LORD has taken away;
may the name of the LORD be praised."
I try to worship God in the tough times, but I don't find it the first thing I always turn to. God has been a constant comfort to our family and I have also read some verses yesterday in 2 Corinthians that talk about God's comfort. I love all of these verses and I will just reference them as my posts tend to get a little long and I want to finish this post. 2 Corinth 1:4-6, 2 Corinth 2:14, 2 Corinth 4:16-18, and 2 Corinth 12:9.
Eric is not up for visitors lately, but please send your comments, e-mails or phone calls and I will share them with him. Please continue to pray for our family as that is all we really need right now.
Love,
Lori