Yesterday, Monday October 22, I stayed with Jeremy in his room in ICU from about 11:30 – 7:45. When alone, it is often hard to go into his room because he is so diminished. Once, during the chemo treatment cycles, he said to me, “I look like Frankenstein.” At that time, I thought, No darling, I think we’re more in the night of the zombie phase. As the chemo toxicity began affecting him more and more, he stumbled as he walked, lurching and falling. Believe me, there were terrifying moments. I had to work through my resentment at seeing young men on the chemo floors jauntily pushing their intravenous equipment along the hallways. Why were they recovering from chemo so quickly and why was Jeremy’s recovery more of a regression?
Without being crass or uncaring, because my heart is breaking, we are now more at the Auschwitz survivor stage. And because so much of the news has been increasingly disheartening (I can’t count how many times I’ve thought, He can’t possibly live through this—this treatment, this infection, these spiking fevers)—sometimes I’ve dreaded what we’d face when we entered Jeremy’s room this day (whichever day). It has been a testament to your prayers, to Angela’s stamina (not that she hasn’t had wretched and wearying moments), to Jeremy’s amazing determination, and to the divine gift of buoyant hope.
I’ve discovered a prayer that has helped me push through the dread. The prayer is this: Thank you loving Heavenly Father for trusting this family with this suffering and this sorrow.
Two weeks ago, at the last moment, I decided, with a push from family members, that I needed to attend the board meeting of Medical Ambassadors International in Modesto, CA. This meant that family and friends would have to cover my rotation at the hospital; frankly, my leaving would put extra pressure on all of them.
I travel standby, compliments of a friend who was a former airline employee, so I had plenty of time to work things out with God regarding my son. In Catholic theology, there is a much clearer understanding of the concept of redemptive suffering—that those who suffer can use that pain to understand the passion of Jesus for this world and as Scripture says, “to fill up the suffering of Christ. . .” This is a concept that I don’t think I will ever completely comprehend. However, I don’t want to be self-centered with the suffering Jeremy and Angela are experiencing or that our extended family (friends included) are feeling. Anne Morrow Lindberg once said that pain is the most individualizing thing in the world. It can focus our feelings on ourselves and our problems to the exclusion of everyone else who is also in agony. I do not want this suffering to make me narcissistic.
So I began to ask that the prayers for my son would also be applied to that Muslim father in Syria, for instance, who news photographers caught carrying the dead body of his five-year-old boy. As I moved from gate to gate on my Chicago to San Francisco transit (eventually four in all), I lifted to God the laments of all those caught in tragedy and distress and agony and confusion—as many as came to mind. I also discovered an error in my thinking: I had slipped into a kind of urgency that insisted I was an essential part of Jeremy’s healing. Attitude correction: I was to be a loving presence to my son, but his progress, his healing, his fate were totally in the hands of his Heavenly Father, who I know loves all my children and grandchildren more than I can fathom.
Walking down the gangway, I prayed that prayer (or perhaps the Holy Spirit spoke it in me), “Lord, thank you for trusting this family with this sorrow and this distress. Thank you for thinking we would be spiritually mature enough to walk this Golgotha road without bringing shame and dishonor to your NAME.”
Yesterday, when I arrived at ICU, Angela and the nurse, Samantha, had exercised Jeremy in bed; Samantha and I continued so until the physical therapist arrived. Much of what she would normally do had been done, so she proceeded to assist Jeremy to sit upright on the side of his bed. Huge progress.
Now remember, we are in the “Auschwitz survivor” stage, but the ICU staff and the ICU doctors are pleased and excited. “He’s really doing well,” they report. No infection in his body or in the lymph node biopsy. (Which is still a hard knot in front of one ear.) He’s breathing better on his own. His vital signs are good, blood pressure is under control. His white cell count is up to 4.5. ICU is putting him on what they hope is a better G-tube feeding plan. He looks healthier. And on and on. Instead of his eyes being open as they have been for the better part of months, they are now closed. The ophthalmologist who checked him while I was there last week mentioned stitching his eyes closed and when I groaned, she suggested we could try tape first (!) But it looks as though something or Someone else got there before her.
I am reminded that there are things on heaven and earth we know not of. I am reminded that we are living in the middle of a mystery—draining and frustrating and terrifying and wondrous—that is beyond our understanding.
I phone David with the ICU report. He can’t talk because he is weeping, “It’s just means so much to get some good news.”
Yesterday, I worked for a long time on Jeremy’s right hand, which is weaker than his left hand. The therapist taught me how to do a flex and stretch activity. After several of these gentle exercises, I gave him a child’s hand ball that Angela had left in the room. This kept the fingers from curling again. I will probably always carry this image in my mind of Jeremy at 41 years of age, resting—his mouth open, his eyes closed, and his right hand holding the child’s ball. The incongruities are hilarious, tender, frightening, exhausting.
“Jeremy,” I say, “Close your mouth.” For months, due to the bi-lateral facial droop, he has not been able to do this; then there was the respirator which forced his mouth open for days, now the tracheotomy—enough said. The therapist has taught me that we need to get the body back into its normal habits; it has been so violated by necessary medical procedures. When Jer closes his mouth, which he can do by himself—what a joy!—he breathes through his nose, saliva forms in his mouth and he swallows. I gently remind him, “Now Jer, I’m not nagging. Just reminding you that we are giving signals to the neurological and muscular apparatus that we want to go to normal again,”
After some hours of all this, my son rests; worn out, I rest. Jeremy lifts his left hand over his head to the ceiling. Is he stretching? Is he seeing visions? Is he counting, as he did before he became so ill with this toxemia, the dots in the ceiling tiles? I can see his tongue move in his mouth. Suddenly, I suspect, though I can’t prove it, that he is praying.
Thank you, Father, for trusting this family with this sorrow.
Your prayers for us are being answered. However, the hematology oncologists are searching for lymphoma—a bone marrow test today; another spinal fluid tap on Thursday. Our requests are obvious.
There are more things in heaven and earth than even great medical teams can know. Let us move into mystery.
~~ Karen Mains