December 2 Update

Last night was the first night of Chanukkah. This was the first year of our marriage that Kevin and I didn't sing the candle-lighting blessings together. Kevin's shortness of breath has reached the point where talking is very difficult, and singing is impossible. I sure missed his off-key voice.

Even though his breathing is shallow and he sometimes has difficulty getting his breath, the good news is that the loud wheezing that drove him crazy has disappeared, thanks to drugs and prayer. Other than that, this is a wasting disease, and there is no way to put a positive spin on what is happening to Kevin's body. It is helpful to remember though, that the spirit can rise above physical limitations, and Kevin's spirit continues to do so.

The steroids helped his appetite to pick up for a day or two, but now he is taking in little more than protein drinks and continues to lose weight and grow weaker. The ten or so "normal" steps to the bathroom from his chair in the living room had become arduous, as it took more and more small shuffling steps to get there. So a couple of days ago he asked to be wheeled to the bathroom in his wheelchair from now on, as the short walk just had him gasping for breath. He needs my help lifting him in and out of the chairs, as he is no longer strong enough to push himself up unassisted. That gives me a change to give him a hug once I get him to his feet.

Kevin is sleeping more. Some days he just nods off several times for 30 mins to an hour at a time, other days, it's more like his sleep is interrupted by a couple of hours of wakefulness at a time. When he does sleep, it's often very deep and when he wakes, he feels like he's been asleep a long time. Earlier this morning, he woke after sleeping for about an hour, looked at the time and exclaimed, "Only 9:00!" then tongue in cheek, "Have you been giving me time-slowing drops?" I sort of have -- hospice has me giving him morphine sulfate drops to help his breathing when it gets really bad.

He is still lucid most of the time when he's awake, but doesn't have the energy to do more than watch TV or movies with simple plots. A couple of days ago, we shared some good laughs watching Big together, and yesterday Rabbi Bruce came for a few hours to watch Band of Brothers (Kevin's favorite mini-series ever) episodes with him.  A couple of weeks ago friends helped me separate our sectional so that I could put the love seat part right next to Kevin's reclining chair. That way I can be comfortable and sit and hold his hand or snuggle up to his shoulder while we watch TV. He's in that chair 24/7 now, preferring it to the hospital bed for sleeping. (Best investment we ever made -- HumanTouch ergonomic recliner!) Elke, the angel-dog, can climb into his lap from the adjacent love seat, and does so regularly when she hears labored breathing. She just snuggles in his lap and comforts him.

A few days ago, I asked Kevin what he'd want to say the most if he could write in his blog. He said he'd want you all to know that he's not afraid. The panic attacks he was having awhile back were not due to a fear of dying, but rather due to a fear of hospitals (exacerbated by drug-induced anxiety). When he started feeling weaker, he was afraid he would end up in a hospital with IVs stuck in him and never leave. We are so grateful, that instead, we can do home hospice. He's told me often that he doesn't fear death. When we talked a few days ago about the peace he has, he said he's been thinking of the scripture that assures of eternal life for those who accept Messiah's atonement:

"So when this corruptible has put on incorruption, and this mortal has put on immortality, 

then shall be brought to pass the saying that is written: 

‘Death is swallowed up in victory. 

Death, where is your sting? 

O Hades, where is your victory?’” I Cor 15:54-55 

I asked him if the next life was feeling more real to him. He answered that he has a sense that he's going home, but he still wonders what it will be like -- if we will have bodies that walk around or if it'll be more of an astral projection kind of thing. I think what he really wants to know is if there will be Harley riding in heaven. (I just read this to him, and he smiled and nodded vigorously at that last sentence.) I'd like to think so. Or maybe, the freedom and joy he's always felt when riding is just a foretaste of the freedom and joy that is the normal state of being in heaven. Either way, Kevin's always been up for an adventure, and I think he's up for this one, too. saying that even if he doesn't know what heaven will be like like, he knows it will be good. (He just nodded again, and he affirmed that this paragraph captures what he would want to say.) He's also greatly comforted by the certainty that his physical suffering will be over, and that he will one day see his loved ones again.

We continue to count our blessings, especially all the incredible support we receive. Rabbi Bruce and Debi were at our door in minutes on Sunday afternoon, and gave up hours of what they'd had planned for the day to be with us, after I called them, scared and sad -- it was the first time I'd experienced Kevin sleeping so deeply that he couldn't be roused. Kevin's family is very THERE for us and with us, even though they are in Oregon. thank God for modern technology that allows us to stay close. My family is also very supportive and wanting to help. Beth El continues to be like a family to us in so many ways, and our neighbors continue to be shining example of neighborliness. 

We also -- as always -- appreciate all the emails, blog and facebook comments, and especially the prayers. I especially want to thank those of you who have written to say what Kevin has meant to you over the time you've known him. It's gratifying for him, and me, to know that he has been able to touch lives.

Happy Feast of Dedication (Hanukkah). Whether you are Jewish or not, it's a good time to reflect on the people and things you value in life and how dedicated you are to them. God continues to affirm to me throughout this difficult time why he is worthy of my dedication. More about that in the next blog.

Best,

Roni