By; Carole Norman Scott
Before I started my Chemo for Non-Hodgkin’s Lymphoma (back in 2003), I went down to see Ben because there wasn’t time to bring him home before I was to begin the treatments. I very plainly explained to him that we were going to do this visit differently because I was going to be taking some medicine that would make me very tired…that we would go to a motel and stay allnight (instead of going home)…eat dinner and breakfast out, and then I would take him back to his living unit the next morning. He seemed to understand perfectly and was very happy to be taken out just overnight. I asked him what he wanted for supper and he said, “Pancakes, sausage, eggs, juice!” So, that was what he got! The next morning I said, “Ben, what do you want for breakfast?” You guessed it…he said, “Pancakes, sausage, eggs, and juice!” He is usually on a low-cholesterol diet, but they have told me that for the period that he is home (or we’re visiting there)…to let him have what he wants…that just a few days won’t hurt him. He seemed to enjoy it thoroughly, so we’ve done that several times now. He likes to go shopping at the new mall there in Conway, and to Big Lots in the evenings! He likes being out with the people. He “goes with the flow” so beautifully, and I think he understands a LOT more than we will ever know (or he can ever tell us). Also, when I WAS able to have him come home, but was still not “up to par”…he was happy to change our usual schedule to a much less active one. He worked puzzles, watched TV, and rested too. He seemed to realize that I needed his co-operation, and he gave it whole-heartedly!
As I was having the chemo, they called me one day and asked me to call and talk to Ben and re-assure him that I was OK, as he had been carrying a picture of me around and was looking at it saying, “Mom…Mom!” They felt that he was concerned for me, and it would be good for him to hear my voice. I did call him, and they said he seemed much more “at peace!” He was forty years of age at that time.
Another time, he had been quite agitated for several days (which is NOT good). They called and told me, and I prayed about it. The Lord then showed me some Scriptures to share with him. I called him and read the Scriptures, and then sang the old hymn to him that goes, “Peace, peace, wonderful peace…coming down from the Father above. Sweep over Ben’s spirit forever, I pray…with fathomless billows of love.” They said that seemed to minister to him, and he was much calmer thereafter. As I’ve told you…he loves to hear about Jesus!
Conversely, there was the time my husband went to pick Ben up for Christmas and ran into ice and snow between Russellville and Conway. It took him longer to get there than planned, and when he arrived, Ben had lost his patience, and had “re-arranged” the Christmas tree in his living unit due to his upset over the proceedings!
Also, there was a time when I called to talk with him (or to him…he just repeats the last few words you have said), and hearing my voice either triggered home-sickness, or some other need that he felt wasn’t being met. I was told that after we hung up, he had a “wing-ding!” Thankfully, no one was hurt, but it just proves the unpredictibility of the behavior when one can’t speak out their frustrations. It also proves that we can only do the best we can as parents…care, and try to do what we would want done for us if we were in their shoes! Sometimes it’s like sticking your head in the lion’s mouth…but other times…it can be SWEET! Hang in there mommas and daddys! They need an advocate, and we are “it!”