I had projects waiting to be completed, letters to write, and activities to plan. I was eager to get started or get back at them. Today, I don’t seem to care. They are trivial and seemingly unimportant. What has changed?
I got the call a week ago on Thursday evening. I had waited for it all day. After nearly two weeks of symptoms—headache, vomiting, and general fatigue and feel bad—numerous doctor’s appointments, and countless medical tests, we were waiting to hear the results from the MRI. The ENT doctor had discovered the nystagmus, uncontrolled eye movements, Tuesday afternoon and immediately set up an appointment with the pediatric neurologist for Wednesday afternoon. The neurologist saying, “Let’s not wait until tomorrow,” scheduled the MRI for 9:30 that night. Prayer mode kicked into higher gear!
After learning of the nystagmus, I did some googling—not necessarily a good thing to do. While praying for the best outcome, an old “what if,” worst-case scenario habit, kept haunting me. She, my ten-year-od great niece, was exhibiting five of the six symptoms of a brain tumor! The call came. “It’s a brain tumor.” Okay, I was somewhat prepared for that. What came next had never entered my mind. “It is inoperable, on the brain stem and too large and entangled with other tissue. They will do some radiation to hopefully shrink and stop the tumors growth.” The projected prognosis is the worst imaginable. The emotions came quick and hard even while I said my goodbyes, “We are praying. Keep in touch. I love you,” and clicked off the phone.
I fell into the sofa crying. I wailed, “Oh, God, no!” I cried more. My wife held me. We held each other. We cried. My chest hurts, I can’t get my breath. Am I having a heart attack? The sobs and pain lessened momentarily only to come roaring back again and again. It felt like a vise was tightening around my chest. Just breathe. Just breathe! Is this what a broken heart feels like? My heart breaks for my sweet little niece and her family—her mama, daddy, big brother and big sister. My heart breaks for her grandmother, my sister. I am heartbroken.
In the week since the call, I am not crying as much, but there are still times that I feel myself “going down” and tears welling up. I have asked “Why, God!” No answers other than we live in a fallen imperfect world in flesh and bone imperfect bodies. Don’t know if that is God’s answer or mine. I haven’t been able to focus on much other than staying in touch with the family, keeping others posted on what is happening, joining the wonderful “tribe” of folks who have come together to support my niece and her family, and reaching out to friends asking their prayers. I have learned a lot—more than I would want to know–about Diffuse Intrinsic Pontine Glioma (DIPG), a rare and the most devastating pediatric brain tumor. I have researched numerous clinical trials. We are hopeful and thankful that she has seen the doctors at MD Anderson, St. Jude Children’s Research Hospital has called, and there seem to be some options for clinical trial participation. Outside physical labor has provided some respite and distraction. I have weeded and spread 60+ bags of mulch in various beds this week. Good sleep seems to only come with total exhaustion. I could retreat into total aloneness. I know that would not be a healthy choice for me so I try to balance alone time and being with friends that I care about and I know care for me. I continue to pray even as I have no words. I am reminded of James Montgomery’s hymn “Prayer is the Soul’s Sincere Desire.”
Prayer is the soul’s sincere desire
Uttered or unexpressed
The motion of a hidden fire
That trembles in the breast
Prayer is the burden of a sigh,
The falling of a tear;
The upward glancing of an eye
When none but God is near.
Yet, every time I turn to other interest that I have been passionate about—social justice issues, civic organizations, ministry and advocacy work—they just don’t seem to be important or matter anymore. My head tells me they are important and maybe the passion will return in time, or maybe not.
In my heart right now, nothing else matters!