He whose heart is kind beyond all measure
Gives unto each day what He deems best;
Lovingly, it’s part of pain and pleasure,
Mingling toil with peace and rest.
~ From Day by Day, a Christian hymn
I try to have the lights off in Seth’s room by 10:00 pm, after I’ve read to him from a book (sometimes fiction, sometimes not), the Bible, and prayed over him. Sometimes he’s almost asleep but often his eyes are wide open. It’s quiet, it’s dark, and I wonder what he thinks about after I leave his room. Obviously, he spends a lot of time alone like that. For the past twelve and a half years I’ve wondered how much he actually contemplates what is going on around him. Sometimes I get glimpses into his private thoughts by the limited responses he makes.
This past summer he turned 35. I took him to our annual church service and picnic at nearby Lake Wilderness Park and set his wheelchair at the back of the crowd of church folks while we sang accompanied by guitars, and then listened to Alan (the other pastor) bring a devotional message. Alan began to speak on the subject of envy, how we all have the tendency to want what others have. As I listened, I thought to myself, “How could someone like Seth—trapped as he is in a body that cannot respond—not desire what others have, those things are the merely normal functions that others take for granted, e.g., moving, eating, speaking, etc.?” I glanced over at him, and for the first time in years saw tears running down his cheeks. It broke my heart.
The chronic cough he’s had for nearly two years is apparently due to the fact that he’s lost much of his ability to swallow, so his saliva, etc. tends to find its way into his windpipe and he must continually cough to keep it from going down into his lungs. There is always the danger that, as the muscles around his larynx gradually weaken from lack of use, he will aspirate and develop pneumonia. The doctors are surprised that he hasn’t done so already. In order to reduce the amount of saliva, he receives Botox shots into his salivary glands and regular applications of ear patches. These procedures have lessened the frequency, but certainly haven’t eliminated, the coughing. Should his condition worsen, the only options would be surgical—either remove the salivary glands altogether (complicated in his case) or surgically close off his windpipe and have him breathe through a hole in his neck for the rest of his life. I abhor the thought of either and can only hope that he can be maintained at his current level as long as possible.
The Christmas season was a nice break in our routine. As usual, I set up a tree in Seth’s room that he could look at from his bed and my daughter, Holly, masterfully added the decorations. My mother, who will be 90 this February, spent a week with us and I know Seth thoroughly enjoyed her fussing over him. Always a grandma!
Update on the Esvelts
June 10, 2015
I feel like apologizing for the length of time since my last update, but the routine that Seth and I have established has had little in the way of significant interruptions, either positive or negative. Tomorrow I’ll be taking him to see his family physician in hopes that something can be figured out regarding a chronic cough and congestion that Seth has struggled with for over a year, something in his throat as opposed to his lungs. The delicate way the doc has expressed it is, “not processing his secretions very well.” Much has already been tried in the way of medications. Otherwise, he seems in good shape, with regular sessions in his Quadriciser (passive exercise machine) and on the tilt board.
This being the anniversary of my marriage to Mary 43 years ago, I thought it might be interesting—especially to those of you who knew Mary—to include a note she wrote on our last anniversary together, three years ago. She wrote the following thoughts while recovering in a rehab center shortly after brain surgery, apparently with the intention of putting them out as an update (but for some reason she neglected to give them to me with those instructions).
(June 10, 2012)
Forty years ago today on a magical June day, Craig and I stood in my parents’ beautiful backyard as we pledged to love each other in sickness and in health, me in my ecru-colored (off-white) cotton muslin wedding dress carrying a basket of daisies and Craig in a pink sports coat of his dad’s! I could only imagine on that June day that every time a page would turn in our life journey, it would say, “And they lived happily ever after.”
Every wedding has a glitch, and ours was no exception. Less than a week before the big day, my pastor decided that, since Craig had not come to Christ, he could not marry us since we would be “unequally yoked.” My dad, who was not a believer, was on some city committee who had a pastor as a committee member. I think he slipped him a few bucks and talked the pastor into marrying us. A little unconventional, but I guess it took! And then I had an amazing front row seat as I watched God pluck Craig from the kingdom of darkness to the Kingdom of Light and give him a purpose in life bigger than himself.
We were such babies in Christ and knew so little, but we had an unquenchable desire to know God through His Word. We began getting up early every day (no one told us to) to read, study, and memorize the Word of God. I’m sure we weren’t even familiar with Matthew 7:24 which talks about the wise man building his house upon the rock compared to the foolish man who built his house on the shifting sands of popular culture. The verse goes on to say that WHEN, not “if” the storms of rain and wind come, the house on the rock will stand firm.
Forty years ago, as the pages of our lives gently turned in the breeze, we could have never imagined that a few years later there would be a page that read, “Rheumatoid Arthritis” and would include years of pain along with six total joint replacements and 13 reconstructive surgeries as the disease slowly worked on my body. Even more of a storm would have been August 16, 2003 when our only son, a college senior, would be involved in a near-fatal car accident that would leave him in a vegetative, minimally-conscious state. But even the shock of that pales in comparison to May 13, 2012, when I was diagnosed with malignant brain cancer.
How grateful I am to God that 40 years ago He directed us to start building our house on the solid rock. All praise to Him!
Although she’s been gone for more than two and a half years, her expressions of faith and perseverance continue to challenge and encourage me. How I miss her!