Home again at last

We’re so thankful to be home again at last after a blur of a week and glad to ring in the New Year in the comfort of home. We needed an extra day or so for the neuro team to be confident that Susan’s meds were properly arranged. Once she was off Ativan and seizure free for a full day and then some, she was discharged Sunday afternoon.

We’ve shifted to home care, her first shower in over a week, and sleeping through the night without full-voiced staff coming in to take Susan’s BP or check her blood sugar. She’s already gained strength amazingly for having been bed bound, but is still a fall risk. She’s chipper, chatty, and the right amount of sassy. I’ll keep a close eye on her through tomorrow and make sure she has stand-by assistance and alert eyes for seizures.

Susan and I would like to thank everyone who has lifted us in prayer and provided support for us not only through this episode, but for the past 5 ½ years. Our gracious Lord keeps providing for us in every way, sustaining us with hope and peace for this life and the next. We continue to pray for Susan’s recovery at home and for a favorable brain tumor update in three weeks.

Hanging tough in brain tumor world

Susan's condition has remained stable over recent weeks with some improvement in strength. Although she needs full-time care and assistance to walk and accomplish daily activities, she can more easily lift herself from an elevated chair and handle small stair steps. We're so grateful to enjoy another period without complications, infections or hospitalization. More importantly, I'm amazed at Susan's attitude and outlook, and her tenacious inner strength. She's gracious when needing help, positive that she's doing better today than yesterday, and usually ready to kid around and be sassy. On Sunday as we were leaving between church services, our friend Randy drove up the crowded aisle and asked if he could have our parking space. I shut her door and I joked it would cost him five dollars. I got in the car and told Susan about it. She said, "That's good. You gotta get 'em when you can."

Every Christmas I look forward to when I once again realize the magnitude of God's gift to us in the birth of Jesus. Sometimes it's in a scripture, or in a song; in prayer or in hearing a sermon, or in a God-breathed human encounter. I'm still soaking up this year's moment. Todd VanEk had a word in his sermon Sunday on Luke 2:12 where the angel says to the shepherds, "This will be a sign to you: you will find a baby wrapped in cloths and lying in a manger." Everything about this announcement shattered people's expectations about the coming of the King of Kings. The news was given to shepherds, who were poor and marginalized. The King was a baby – weak and dependent, clothed in rags, and lying in a feeding trough for livestock. The urine and manure may have been at a safe distance, but the smell wasn't. Then Todd brought the zinger. Jesus was born into a mess. The "sign to you?" There is no human mess Jesus is not willing to enter, bringing healing, strength, grace, and mercy. Wow. That was it. That's the room in my heart I could prepare for Jesus this Christmas, and he came right in.

I was not prepared for the living example of Jesus' love that would follow just minutes later, after church. The woman sitting in front of us with an infant turned out to be our friend Patti. I did not know she and her husband were expecting. We learned they stepped in as parents of their relative's baby boy after he suffered abuse and broken bones in only the first six weeks of his life. He's nine weeks old now. They've had him for three, and are willing to adopt him if the legal arrangements can be made. For now, these 30-something Christian parents are adjusting their lives, their family, and their careers to make room for another baby boy born into a mess. This is selfless love – astonishing and familiar. It's a fitting display of God's Kingdom that arrived on Earth with baby Jesus in Bethlehem. As we prayed with tears, I could see the Spirit of our Savior bringing healing, strength, grace, and mercy to this baby and to this family – just like Jesus has always done. I'm so glad to have met him again.

What brain tumor?

I called home from the office this morning to check with Susan and see if she was feeling better. She’d had a few symptoms return after a weeks-long absence and was feeling tired and discouraged when I left the house. By mid-morning, she’d slept some more and was feeling well. When I called, we had one of those fluid, lucid conversations that are becoming more commonplace and lead me to wonder, “What brain tumor?” Susan is clearly in the best shape she’s been since last year at this time when hydrocephalus set in and set off a season of infections, fractures, illness, and hemorrhage. Her improvement over the past 3-4 months has been remarkable – and most welcome, since it’s ushered in a level of normalcy to our household that we’d missed for a long time. This morning’s episode reminded both of us how little she’s been ill recently and alerted me that complications could interrupt our lives again at any time. We remain, as ever, squarely in the Lord’s hands and thankful for Susan’s healing, strength, and restoration.

We had a conversation at church recently with some friends who have been faithful in support and prayer for Susan. A typical 5-10 minute chat involves the weather, the movie you saw, the team you like or what the kids are doing, so it’s not ordinary for a person to speak of death and dying in the span of a casual conversation. But when Kristen shared that she’s been encouraged by Susan’s faith, Susan responded honestly in what’s become a normal (but not too frequent) acceptance of our situation. She said something like she couldn’t have expected all that’s happened, but she’s ready to go home to the Lord whenever he’s ready for her. She believes God has a purpose and work for what remains of her life on earth, but when it’s time to go to heaven, it will be far better than being here.

Her comments demonstrated Susan’s peace with her circumstances, her trust in whatever the Lord’s plans are for her and the glorious confidence she has in her future. I couldn’t help but note the odd contrast of her words considering how well she’s doing, but I also cannot imagine a greater gift than God’s perfect love that casts out all fear (1 John 4:18). It’s just like our good and sovereign Lord to solve a problem for us that way – if he doesn’t remove the circumstance that’s giving us trouble, he’ll take away its ability to trouble us.

Paul writes, “Where O death, is your victory? Where O death, is your sting?” The passage he quotes in 1 Cor 15:55 is from Hosea 13:14,

“I will ransom them from the power of the grave; I will redeem them from death.
Where, O death, are your plagues? Where, O grave, is your destruction?”

Put another way, the Inez Andrews gospel song says, “Lord, you don’t have to move my mountain, but give me the strength to climb.” I just love that Susan is living it.

Coming home

Susan continues her improvement and will be discharged from the rehab hospital next week, returning home for the first time in over three months. We’re very grateful and a little apprehensive. Susan will return in much better condition than in July, when weakness intensified by hydrocephalus, infection, and steroid-induced muscle loss made her unable to walk and required 100% help with everything. Since I haven’t been with her recently for more than 5-8 hours at a time, I’ll soon learn just how much she’s improved. I’m arranging for care at home to be provided by several sources, including a part-time paid caregiver. Susan still needs 24-hour supervision and help to stand, transfer, walk, and do other basic activities. She may be able to handle the multi-disciplinary therapies with Rehab Without Walls like she had a year ago, but not until she’s able to handle three hours at a time. Their evaluation on Thursday didn’t go well since she’d been up all day, had a full therapy session, and needed to sleep.

Susan is apprehensive about coming home also. The improvement we’re grateful for has made her more aware of herself, including what she cannot do. She told me again she’s “not the same version of me” she was before, and she doesn’t want to be a burden. I continue to assure her she’s doing tons better than three months ago – and we were able to handle it then. Tuesday will be her last full day at Broadway by the Sea. I’ll pick her up Wednesday morning for her chemo treatment at UCLA; then we’ll return home together late that afternoon. Although Susan is uneasy and I need to gear up for her return, I know we’ll settle in soon. It will be good to have her home again.

I read an astonishing scripture verse last week in Streams in the Desert from Isaiah 30:18, “Yet the Lord longs to be gracious to you; he rises to show you compassion.”

This is a remarkable statement of the nature of God and a stark reminder that we don’t know Him well enough. How often are we apt to raise our voice to heaven, shake our fist at God, and rage at Him for allowing calamity to beset us in what we know is a fallen world? Or how often are we so caught up in guilt for sin He’s graciously released from us that we view hardship as a punishment we think we deserve? Someone said what you think about God is the most important thought you’ll ever have. It’s true – so much depends on our view of God. That’s why Isaiah 30:18 is so astonishing.

“The Lord longs to be gracious to you.” If I were God, the Almighty, the Eternal One, the Creator of all things visible and invisible; if I were the Holy King who is perfect in purity and needs help from no one – would I long for something? Really now, God doesn’t need anything, does He? But this Word reveals that the Lord has a longing, an ache, a deep yearning. Is it more amazing that God yearns or that we are the object of his yearning? He longs to be gracious to us. Once again, if I were God, infinitely powerful, unique in all existence, and truly self-contained, why would I bother with these horribly faulted humans who inhabit a puny and decaying planet in a lesser solar system? The statement speaks volumes about our wonderful Creator. He’s crazy about us. He loves us more than we can ever know.

“He rises to show you compassion.” Imagine God, in whose image we have been made, seated on His throne in Heaven. The foundations of that throne are righteousness and justice, according to Psalms 89:17 and 97:2. When the prophet Isaiah had his vision of God’s throne, he “saw the Lord seated on a throne, high and exalted, and the train of His robe filled the temple” (Isaiah 6:1). In John’s vision from Revelation 4, he describes the throne, the rainbow encircling it, the 24 other thrones surrounding it occupied by 24 elders wearing white garments and crowns of gold; the brilliant lightning and peals of thunder. Got the picture, sort of? It requires us to visualize a scene of supreme majesty, visible glory, and awe-inspiring authority that lies beyond our realm of experience. If we could truly comprehend being there, the idea of God rising from His throne would certainly get our attention. What’s He doing? Why is He getting up? What’s going to happen now? “…He rises to show you compassion.” Oh, man. The thought of it lays me low.

The active sense of the verse suggests God is continually ready to get up and love us. It also hints at a singular loving act when Jesus, otherwise seated at His father’s right hand, rose from His throne, assumed human form, descended to earth, and offered His life in order to take upon Himself the penalty of our sin. “The Lord longs to be gracious to you; He rises to show you compassion” fits perfectly with God’s own pronouncement of Himself to Moses: “The Lord, the Lord, the compassionate and gracious God, slow to anger, abounding in love and faithfulness, maintaining love to thousands, and forgiving wickedness, rebellion and sin" (Exodus 34:6). The Apostle John says it so simply, “God is love" (1 John 4:16).

This view of God has profound consequences for us. Consider Susan’s brain tumor or any other human tragedy. Is it an act of miserable fate allowed by an indifferent supreme being? Is it a work of cruelty by a surly punisher who dispenses lightning bolts on his failed experiment? Or is it an unusual promotion to a new perspective, an opportunity to discover you are the recipient of exceptional love from the Living God?

Complications persist

This has been a tough couple of weeks for Susan. A nurse at Broadway by the Sea called late Friday to inform me the blood cultures taken earlier in the week had come back positive for e coli – the infection had spread from her urinary tract to her bloodstream. They were starting her with an antibiotic called recophin to be given IV for ten days. A quick call to Dr Nghiemphu clarified that a blood infection can be serious; but it’s encouraging that they caught it early. She feels the recophin will do the job.
I took Susan for follow-up to UCLA yesterday to visit Dr Uslan with the infectious disease team, who said urinary tract infections involving e coli can be an issue for patients dealing with incontinence and they can sometimes travel to the kidneys and infect the blood. He examined her port catheter also since infections can also result from IVs; but the catheter site looks ok and is contained under the skin. He confirmed recophin as the treatment of choice, took another blood sample, and ordered a follow-up blood test for several weeks from now to check her status.

We finally got Susan scheduled for her lumbar puncture (spinal tap), so we were back at UCLA this morning for the procedure. We checked in to the radiology unit at the Ronald Reagan Medical Center so the neurosurgeon could use their fluoroscopy (video x-ray) equipment. The procedure went smoothly – the surgeon collected about 25ccs of fluid. That alone should help the hydrocephalus for now, while the fluid will be checked for infection. Susan was in a lot of pain since all the bed-wheelchair-car transfers aggravated her back injury. She said everything hurt, so I couldn’t tell what was back pain or spinal tap pain or what. I stopped by the oncology clinic to get Susan some vicodin before we headed back to Long Beach. Nurse Nikki was alarmed that Susan wasn’t kept lying down – standard protocol is to lie flat on your back after a spinal tap to prevent any leakage. (What do I know?) Dear Nikki found Susan a bed in the clinic so she could rest a few hours and gave her some pain meds. Such great staff have made the Jonsson Cancer Center clinic a refuge at UCLA when Susan needs help. We’ll be back next week for MRI, doctor visit, and chemo, and we continue to pray for her healing in all respects.

Susan keeps the physical therapy staff at Broadway by the Sea laughing. One day last week as she was ready to walk while holding parallel bars, John prompted Susan to step towards him. She didn’t respond right away, which is not unusual since she sometimes has trouble initiating an action. He prompted her again, but she still didn’t react. When he encouraged her a third time and she just stood there, he became concerned she might be having pain or something. He asked, “Susan, is something wrong?” She gave a droll reply, “Well, I do have this illness...”

A fall and a fracture

Following Wednesday’s chemotherapy treatment at UCLA, Susan took a hard fall in the bathroom at the oncology clinic. I had lifted her from her wheelchair and had her standing steadily while holding the grab bar when I turned a few steps away to throw something in the trash. I saw movement out of the corner of my eye and turned to see her falling backwards, landing hard on her bottom and knocking the back of her head on the wall just behind her. It was a moment of surreal, slow-motion helplessness for me and one of intense pain for her. She slumped to her right side and cried. The staff heard the impact from outside and came to help right away. While the nurses examined her, we thought it best to call paramedics out of concern for back or brain injury. The medics arrived within several minutes and did their best to move her onto a backboard and fit a neck brace without hurting her, but it was excruciating. Everything hurt.

She was transported around the block to the ER at Ronald Reagan UCLA Medical Center and admitted about 3pm for a CT scan and spinal x-rays. They gave her something really strong for pain that took away the “everything hurts” sensation and allowed Susan to rest a bit. Doctors said the CT scan showed no head trauma or bleeding and said the spinal x-rays were negative also, a great relief. When it became clear she couldn’t tolerate transferring or sitting for a car ride and that I might run into trouble attending her at home, she was admitted to the hospital around 2:30am for observation and pain management.

We learned over the next two days that Susan does have a compression fracture on L-1, her first lumbar vertebra. The orthopedic surgeon said it’s not severe (could have been worse); and ordered a spinal CT scan to check for bone fragments (there are none). She’ll need to wear a brace to restrict her movements when she’s not lying down. She also had a second spinal tap on Friday to drain fluid for hydrocephalus since she was going to need another one soon anyway, and began antibiotic treatment for a raging bladder infection we discovered prior to Wednesday’s chemotherapy. Too much fun for one girl.

After evaluating her condition with the medical team and physical therapists, we decided Susan needs to have rehabilitation in a skilled nursing facility before coming home. That’s a new area for me in decision-making, so our nurse-friend Brenda Carruth came through with some excellent referrals from the discharge planner at Long Beach Memorial. I checked them out on Saturday chose Alamitos Belmont Rehabilitation Hospital in Long Beach. Susan will be transferred there Monday for what may be a stay of several weeks to a month or more depending on her progress. They seem very focused on rehab, so I think it will be a good environment for her to heal and get stronger. Susan may lower average patient age by about 20 years when she arrives. They play bingo there.

When the medics were attending Susan in the bathroom on Wednesday, our oncology nurse Nikki told me pointedly her fall was not my fault. Her words lifted a burden from me. I thanked her. I had not caused her to fall, but I had not prevented it either. It happened so fast – and she fell hard, almost like someone pushed her. It was one of those “if only” moments you wish you could take back and do differently. Since Nikki is both observant and caring, she saw whatever expression I had on my face and took the burden from me. I decided to agree with her since beating myself up with guilt isn’t going to help anything. Susan has had a complicated illness, so we just have to deal with it. Once again, we have felt the vast support of our family, friends and church over these past days. We know God hears every prayer and will continue to meet every need. We always thank Him for his goodness and mercy.

MRI, hydrocephalus, Avastin

Yesterday’s UCLA visit brought some much-needed good news. Susan’s MRI revealed enlarged ventricles that indicate the build-up of fluid in her brain – hydrocephalus. While that’s not good news alone, it might mean adjusting the shunt that was implanted last fall for the same condition could bring relief from Susan’s terribly weakened state. The last adjustment brought quick and dramatic improvement and months of relief. But tumor progression apparently can change conditions in the brain and cause a return of hydrocephalus in some cases. I am waiting eagerly for the consensus at tomorrow’s brain tumor board meeting when Dr. Nghiemphu will present Susan’s scans and her opinion to the other neuro-oncologists and neurosurgeons. Perhaps Dr. Bergsneider who implanted the shunt can make the adjustment soon.

Yesterday’s MRI also showed a big decrease in brain swelling, more good news. It looks like two treatments of Avastin have been effective. But there’s no definite reading on tumor growth right now since they’ll need to see a series of scans without swelling for a meaningful comparison. At least we know there are no new tumor sites. Susan had another Avastin infusion yesterday, but skipped the CPT-11 chemotherapy this time since its side-effects may be complicating her symptoms. She’s still extremely weak, tired, and mentally slow, needing full-time custodial care. We’ll have a wheelchair delivered tomorrow to help with mobility and hope we won’t need it for long. With so much muscle loss from steroids, she’ll need to work a while to get her strength back. Meanwhile, we’re doing a fast decadron taper to 6mg from 8mg this week and to 4mg next week. Susan’s whole ordeal recently has been puzzling since there can be several possible causes for her weakness – tumor growth, decadron, chemo, or now hydrocephalus. We hope for some action and relief, and soon.

I’m coming to know the challenges of dealing with acute long-term care needs. They’re emotional – there’s the pain of seeing your loved one in a compromised state. The challenges are physical – lifting, transferring, bathing, dressing, and doing them over and over again. It’s a grind. The challenges are psychological – the routine pressures of daily life do not stop just because your helpless loved one needs what they need when they need it. The pace of both worlds is hard to reconcile and the contrast is enormous. The challenges are spiritual – waiting on the Lord can seem to be endless when your circumstances intensify. I identify with the Psalmist who cries out, “How long, O Lord? Will you forget me forever? How long will you hide your face from me?” But somehow, God meets our needs everyday with peace for emotional pain, rest for a weary body, strength for a troubled mind, and His presence when hope has yet to be realized. This is so hard – and God is so good.

Yet another hospitalization

Thu 11/01/07
Susan was noticeably more fatigued today after her initial high-dose temodar chemotherapy. We're thankful she's had no nausea or vomiting, and she's doing well overall. We anticipate starting her new home-based, multidisciplinary therapies next week once some remaining details are arranged.

Mon 11/05/07
Following approval by our insurance company, we had an initial visit by a case manager from Gentiva / Rehab Without Walls, a home & community based team of physical, occupational and speech therapists, along with a social worker, who will design a course of treatment for Susan based on her goals. We'll start the evaluation appointments this week.

Tue 11/06/07
Susan has had a tough couple of days following her 5-day cycle of higher-dose chemotherapy. She's been more fatigued and nauseous with some vomiting and a bit more confusion. She's also had more headache than usual; I believe due to her transition from one steroid (decadron) to another (prednisone) in order to help her taper off of the decadron that she's been on since June (a really long time). I'm in touch with her oncologist to monitor her symptoms and hope she'll feel better within a few days.
I'll be seeing a surgeon next week to schedule an operation to remove my gall bladder after a long spell of battling painful attacks due to gall stones. A homeopathic remedy I tried last week allowed me to pass a large volume of stones; but also found me in the ER (again) on Sunday because of the ones that remain. I now accept the facts that the organ is inflamed and prone to infection, that I'm one of those people whose body produces stones, and that it's time to have surgery. Don't ask to see my rock collection.

We continue to be amazed at the love of God's people who continue supporting us prayerfully, physically, emotionally, and financially. Every now and then we catch a glimpse that somehow God has inspired or encouraged someone simply by their observing our situation, along with comments like "more than you know" or "bigger than you imagine." Such an idea is hard to comprehend, and is a work better left to the Lord for a lot of reasons. We are grateful for the assurance that He's working good through our circumstances and that more good is yet to come. Meanwhile, Susan and I are content to trust Him while we muddle through the day-to-day. We also pray for our friends who are afflicted with cancer during this bizarre season.

Wed 11/07/07
Susan developed a low-grade fever last night that moved progressively higher to as much as 100.9 at 3am. With tylenol, her temp was normal in the morning. She also needed vicodin for pain.
When the fever returned this afternoon, neuro-oncologist Dr Nghiemphu and I discussed the possibility of fungal meningitis emerging again. She recommended I take her to UCLA for evaluation. We arrived at ER at 9pm, where they were full. She went from a bed in the hallway to a single room over night, to an ICU by 8am.

Thu 11/08/07
When Susan's spinal tap was positive for meningitis, they began giving her IV anti-fungal meds. A CT scan also revealed enlarged ventricles or brain cavities, a condition known as hydrocephalus that occurs when the body is unable to properly drain & absorb spinal fluid. The risk is increased intracranial pressure, convulsions and brain damage if left alone; and the common treatment is surgically-placed shunts for drainage. However, the shunts can't be implanted as long as fungal infection is present. To relieve pressure in the meantime, the neurosurgery team installed a spinal catheter, sort of a continual spinal tap. They collected quite a volume of fluid under pressure at first. They will continue to drain off fluid daily, send it to the lab for analysis, and hopefully watch the infection abate.
Once again, I was faked out for a while by multi-factor symptoms – head pain from switching steroids and fatigue/nausea from chemotherapy also can be caused by meningitis. Thankfully, fever is a valuable red flag to indicate a greater problem and cause us to act before Susan's condition worsened.
I discussed a PICC line (long-term IV) for Susan with Dr Cutler of the neuro team since it looks like Susan will have a multiple-day stay with lots of need for IV meds. He agreed and ordered the line.
This was a long day as Susan got to a bed on the 7th floor neurological area by about 3:30pm. She's in a special room called NTCU, or neuro transitional care unit, where there are two nurses for four patients who need close observation with frequent vital readings – a step between ICU and a typical room on the neuro ward.
I had another fascinating look at UCLA's ER, a level-one trauma center that is surprisingly small for its significance (and ready for upgrade when the new hospital opens across Westwood Blvd). I observed the interactions of attending physicians, interns, nurses and techs from slower periods to the choreographed ramp-up for an incoming trauma. Two patients came in after a 40 mph pickup vs cement truck crash in Inglewood. After counting down the ETA minutes, they were ready with their 8-10 member team when the ambulance arrived. I was impressed.

Radiation therapy, lots of help at home

Fri 09/06/07
A dear friend from church arranged for Susan to have an alternative medicine treatment with a "quantum biofeedback" system. A type of electromagnetic therapy, the device uses electrodes and 32-gigabyte computer program to analyze a person's physical and emotional condition, identify blockages and imbalances, correct them, and allow the body to heal itself. It's hard for me to summarize the what and the how of energy medicine, but it's another resource we're exploring to help Susan's body fend off cancer and the effects other therapies.

Thu 09/07/07
Susan's condition continues to improve with a high-dose, oral anti-fungal drug called fluconasole (diflucan) that she'll be on until Oct 1. Her temodar chemotherapy will be delayed until about that time to allow the infection to heal. We'll watch her symptoms for any relapse and have blood tests to guard against adverse side effects with her liver.
Susan was attended by friends of ours from church who came by in 3 to 4 hour morning and afternoon shifts to provide care for her while Lexie worked and the boys had their first day of school. I actually went to work for several hours; and Sue's parents took her to radiation. This was the first day of our new fall routine.

Sun 09/09/07
Susan continues to improve with rest and medications. We had some family time with my brother Jon on Saturday and mom, grandmother, and sister Becky on Sunday. We also attended church together for the first time in about a month, enjoying the worship, the Word, and the fellowship.

Mon 09/10/07
We revisited our new fall schedule with Lexie at CSULB, the boys in school, and me at work. Our sister-in-law Dorothy has arranged for morning and afternoon care Mon-Fri with 10-15 ladies from our church. I'm thankful! I set up instructions for her care with physical therapy exercises and other activities during the day, including a pain med log for continuity. We're blessed to have such caring friends who are available to help.
I took Susan to her radiation therapy and our first weekly consultation with her radiation oncologists. We each answered each other's questions – I'm grateful to have these caring specialists on our team.
We dropped by our Pavilions grocery pharmacy to have a prescription refilled and were overwhelmed by the love expressed to us by our pharmacist and his assistant. Ray, the pharmacist, offered us his prayers along with his "whatever I can do" attitude. Sylvia, the tech who also has been a dental hygiene patient of Susan's, gave her a beautiful Enesco angel figurine. People everywhere are amazing.

As we make the transition from summer to fall, I'm grateful for the timing of Susan's illness having begun in early summer when schedules were lighter and more unstructured. I guess if there were ever a good time to get used to having your life turned on end, summer would be it. In contrast, the fall season brings the weight of increased family activities, and the realization that we've quickly gone from Sue and me running our household while supporting three people to me running our household while supporting four. Time whizzes by (I left this website untouched for a week), priorities are numerous, and sleep is precious. It's all pretty heavy. I'm glad we have a lot of help.

Susan and I are continually and increasingly thankful to have each other. She relies on me more than ever, she understands the pressure I must be feeling, and is forever gracious and grateful. I find myself wanting nothing more than to be next to her since the days are uncertain. I am thankful to have her by my side in spite of her limitations – we still confide in and console each other – I still have my wife. We recognize the blessing of being able to communicate as we always have.

We recently read another amazing installment in Streams in the Desert that affected us deeply:

"There is a divine mystery in suffering, one that has a strange and supernatural power and has never been completely understood by human reason. No
one has ever developed a deep level of spirituality or holiness without
experiencing a great deal of suffering. When a person who suffers reaches a
point where he can be calm and carefree, inwardly smiling at his own suffering
and no longer asking God to be delivered from it, then he has accomplished its
blessed ministry, perseverance has 'finish[ed] its work' (James 1:4), and the
pain of the Crucifixion has begun to weave itself into a crown."

Lord, have mercy. I believe – help me also to obey.