We are a fun-loving family. I wouldn't necessarily call us "thrill-seekers"
(unless we are skiing down a mountain....then some of us are definitely more seekers-of-the-thrill than others)...
|a favorite ski run of Tim and the kids|
We have often referred to this cancer journey as a roller coaster. It is an unwelcomed roller coaster that does not induce joy. This end time with hospice is no different. My Tim will have days where he is awake and alert for 6-7 hours. We call these the "good days"; he recently had three good days in a row. Was even strong enough to leave the house on short errands with me. Mixed in with the good days are what we call the "sleepy days". Sleepy days come on suddenly and without true warning. He may wake up mid-morning to early afternoon, go through the tedious process of clearing out his throat, taking his meds and administering a feeding through his tube; only to find himself too exhausted to stay awake. This process could repeat two or three times throughout the day. Some sleepy days allow him to take a few business calls in the minimal, sporadic hours he is awake. Some sleepy days find him only moving from the bed to use the restroom and clear his throat. On average, a sleepy day finds him resting 20-22 hours our of a 24 hour period.
It is this constant up and down that sometimes feels unbearable.
When the sleepy days are linked together three and four at a time, we begin to think that the end is imminent. Then, just as we are preparing ourselves for the inevitable and teetering on making the calls to our family and friends, he rebounds remarkably with a good day. It is a crazy roller coaster with unexpected dips and turns, steep climbs up and stomach-lurching, full-speed drops.
Quite frankly after nearly two years of this constant ride, we are beginning to experience whiplash and nausea. So this last week, when Tim had a string of three good days followed by a full 22 hours in bed; he mumbled to me that he can't make his body wake up anymore. I would go to check on him often and he would state that he was trying to get up, but just needed a few more minutes. (This happened roughly every 2 hours.) I could tell he was scared that he couldn't get himself awake. I assured him that this was his normal cycle and we weren't going to worry about this sleepy phase quite yet. If he couldn't rebound in another 3 days, then we would allow ourselves to begin to think that this really was the end of life process that we have read and been counseled about. But until we reached that point, he should just let his body rest and store up some energy for his next round of good days.
We have always been very open with our children about Tim's diagnosis and prognosis. Bless them. They have endured this roller coaster right along with Tim and I. They have juggled the ups and downs and still maintained their grades and their extra-curricular activities. On the way to school this week I was repeating the conversation I had had with their father. Our daughter looked at me and with the funniest attitude inflection of her voice she paraphrased my message to Tim, "Oh no, honey-child. We are NOT gonna get on this roller coaster to-day. We are just gonna stand at the gate and watch it for a while. We can get on later if we need to." She cracks us up! She also summarized our situation perfectly.
Tim rebounded for a long day out of bed (struggled to stay awake the whole time, but was determined to stay in the living room or home office most of the day.) We are back on the sleepy days again now. This is day two of this round. The kids are home for Christmas break. I find myself realizing that it is possible their daddy will pass away while they are home instead of during their school day. The logistics of it make me feel as though the pit of my stomach is dropping again. But, then I hear my girl's voice in my head telling me, "Oh no, honey-child. We are NOT gonna get on this roller coaster today." Out of the mouths of babes, huh?
While we have no choice but to be at the gate of the roller coaster ride. We do have the ability to refuse to get on with every single fluctuation this disease brings to the death process. We don't have to become panicky over every tiny detail of the end. We can focus on remaining calm and loving towards each other. We can be encouragers to Tim and to one another. We can follow the guidelines of Scripture and trust that God has Tim's days written in His book of life and that His timing is perfect. We can cling to the peace Christ offers us and we can rest under the shelter of the Almighty's wings. And we can hope for more good days to peek through the clouds.
The good days tend to make us willing to jump right back on the roller coaster and create beautiful memories in the process.