L'esprit de Corps

My mom passed away fourteen very long, incredibly fast weeks ago. She died very early in the morning on Tuesday, July 31, 2012, to be exact. Ultimately, it was the metastasis into her spinal fluid -- Leptomeningeal Carcinomatosis -- that did her in. She made the decision one Tuesday to have me call in a hospice agency to help care for her, and by the following Tuesday, she was gone. In the middle of a milky midnight, she parted with her mortal body and made her way Heavenward. What a brave soul.

I saw a friend a few weeks back, one I see primarily at baby showers and birthday parties, and she asked me if I was grieving well. "I don't know, I guess so," I said. In many ways, I think I might still be in shock, even these fourteen weeks later. I'm still waiting on Mom to call me, to ask about the mundane details of my day, to tell me about TV shows and catch me up on the latest gossip, to pick at me, to argue with me. Something. Anything. Being in full control of my faculties, I know the call isn't coming.

I just long for it.

She is especially absent here at the onset of the holiday season -- the savory, sweet days of autumn; the wonderful, wonder-filled days of joy and celebration -- they're different without her. Left behind is a tangible and painful void. No one bothered to inquire about kid Halloween costumes. Thanksgiving traditions for my children will be the ones James and I create on our own or with my in-laws. No longer will there be anyone needing a lecture about the possibility of being too generous at Christmas -- the lecture that Mom's heard and allowed to go in one ear and out the other for as long as I've had children.

Mom was missing from our recent Colorado vacation. After having traveled with us a number of times, it was odd to not even have to take her into consideration. It was also difficult to return to a location where I'd been with her just two years earlier. She was so healthy and ornery on that trip -- we had no idea that cancer was on the radar. We certainly had no idea she'd be dead a mere twenty-eight months later. I imagined all the ways we might have altered things had we known. It was bittersweet to build beautiful, new memories with my family while balancing the what-ifs of a while ago.

We weren't perfect, Mom and I, but despite the strain our individual brokenness often put on our relationship, we were always ultimately there for one another. I miss my champion, and I miss championing for her. I just pray that the days and the ways in which I served her were as much of a blessing to her as they were to me. Above all, I hope I served her in a way that pleases the Lord.

(Mom with her children 41 hours before she died...)

"Honor widows who are truly widows.
But if a widow has children or grandchildren,
let them first learn to show godliness to their own household
and to make some return to their parents,
for this is pleasing in the sight of God.
I Timothy 5:3-4

"Honor your father and your mother,
that your days may be long in the land
that the Lord your God is giving you."
Exodus 20:12

Brystol is Three!!

Our sweet Brystol turned three-years-old on Monday. It was a bittersweet day for me because my mom's health and strength had declined to the point that I had to cancel her playgroup party to take my Mom to see her specialty neurologist in Houston. Our friends were understanding, of course, but all day long I struggled with hard feelings -- happy to be available for and present with my mom, but sad that we'd gotten to that point so quickly and sad to miss my baby's big day.

Fortunately, we were able to make it back to the Metroplex in time to blow out some birthday candles (even if they were on a storebought cake) and to open a few gifts. The best thing about having a big family -- instant birthday party! Brystol had fun, but she did notice when we tucked her in for bedtime that her playgroup friends never came by. We'll reschedule that celebration for a less hectic time.

Cake and Presents

Instant Birthday Party

Special Time with Nanny

Progression

Mom's health has continued to decline. Every day for the last two weeks, her symptoms have continued to progress dramatically from day-to-day. She is hardly able to walk anymore, and when she does, it takes every ounce of focus and strength. She's lost sensation in her abdomen and no longer has the ability to sense when she needs to use the toilet. Her ability to speak is diminished -- her speech is garbled and the volume of her voice is very low. We contacted her neurologist (a specialist in Lambert-Eaton myasthenic syndrome, the neurological comorbidity she struggles with) who increased the clinical trial drug she's taking to the maximum dose, but the increase in medication was no help at all.

She wondered if she'd had a stroke, and after a fall on Friday morning, she spent the weekend in the hospital. The MRI and a couple of other tests came back indicating no significant changes, so it was believed that her symptoms were related to the LEMS rapidly progressing. Though still in a very weak state, she was medically stable, so I checked her out of the hospital on Sunday and we high-tailed it to Houston for a Monday morning appointment with the specialized neurologist.

The doctor examined Mom thoroughly. She verified Mom has declined considerably, and she said there was a remote chance we were experiencing could be attributed to an extremely rapid progression of Lambert-Eaton. However, she strongly believes that this progression is a metastasis of the cancer to Mom's spinal fluid, a disease called Leptomeningeal Carcinomatosis. The associated symptoms and the speed of progression are strong (nearly textbook) indicators. The neurologist requested the oncologist do a lumbar puncture to verify the diagnosis, but today he refused because the test is painful, risky, and unreliable, and even with an official diagnosis, there are no treatment options available to her. There are no other available treatments for LEMS (besides the clinical trial drug she's taking -- 3,4 DAP), and in her declined and fragile medical state, there are no additional treatments available for the Oat Cell Carcinoma. The time has come to hire a hospice care agency, which I will do tomorrow.

Prayer is our most immediate need. This is an intensely difficult time for Mom and for us. She's been feeling a bit isolated since leaving her roommate and moving far from her friends and coworkers. Helping her through that sense of loss is a priority, especially now. We need loads of all manners of grace and strength right now. We're swiftly being swept away towards the dark night of the soul.

"Be strong and courageous. Do not fear or be in dread... for it is the Lord your God who goes with you. He will not leave you or forsake you. It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed." -- Deuteronomy 31:6,8 ESV

"Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid." --John 14:27 ESV

"So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal." -- 2 Corinthians 4:16-18 ESV

Changes

My mom moved in with us a little under a month ago. She drove herself here, she walked in on her own, and she's been rapidly declining since. We've been aware of a steady decline, but we thought she was just really tired. She went out of town the weekend before she moved in. When she returned to the Metroplex, she expended all of her energy packing and preparing to move. Then she moved, and while she didn't personally do any lifting, she'd reached the point physically that doing too much of anything was taxing. Even though she was directing her moving helpers, doing that all day long was exhausting for her. Then, instead of spending the rest of her weekend hours resting, she did some unpacking. The following Monday, she had chemotherapy -- additionally exhausting -- then spent all of the next week working with her house helper to get the rest of the boxes emptied.

When all was said and done, she was absolutely worn out, and we thought that fatigue explained the changes we were seeing in her. We don't go out and do too much these days anyway, but in an effort to help her recover, we made it a point to stay close to home, but even with rest, she's continued to decline. Two weekends ago, we were able to leave her here at the house for a couple of hours while James and I took the kids to do some grocery shopping, and she was ornery enough to argue with me about something silly. By this past weekend, she'd reached a shocking level of immobility and couldn't be left alone at the house at all, the volume of her voice has decreased dramatically, and her speech is so unclear that it sounds like she's chewing on a bag of marbles. Yesterday morning, she could drink from a straw. This morning, she couldn't. By today, Wednesday, she can hardly be left to walk from room to room without a strong adult physically assisting her, keeping her and her walker from taking a spill. Even with constant companionship, she's fallen so hard and fast so many times today (and over the last few days), if she doesn't break something soon, I'll be shocked.

We knew that she would change here. We all knew she would die here, she would go through the process of dying here. It's not a surprise that she's changing, but it is a surprise just how quickly things are moving, especially since the scan she had a month ago seemed so good. She's so very different this month than she was when we went to Disneyworld in April. She's in such bad shape, there's no way we could take that trip now. The rapid pace of things make things so, so difficult. All the changes we've seen in this short amount of time is honestly stunning.

It's hard to be one of the "sandwich generation," simultaneously caring for both parent and child. Today, I had to make calls about homeschool co-op and home health care. I spoke to both an orthodontist nurse and an oncology nurse. I had to assist both my toddler and my mother in the restroom. I gathered my mother up off the ground after a fall just as I gathered up my little ones. It's difficult personally to both observe and adjust to the changes in Mom. It's challenging to walk my children through the changes, explaining to them what's going on with Nanny's health when I don't even understand. It's heartbreaking to sit with my still young mother and hold her hand as I explain to her that there is likely little that can be done now, this is probably the way things are going to be from here on, and that there's a very good chance we'll have to hire that hospice care agency pretty soon. It's hard to do it all alone.

Today, as I spent yet another hour talking to the insurance company about medical equipment, Mom made her way into the restroom without calling for me to help keep her upright. (She's fiercely hanging on to her independence, even if it means she's putting herself in danger.) I'd just been debating needs vs. coverage with the insurance liaison, explaining the physical changes observed in this short time, and defending a new request for hospital tables and portable ramps. I explained to the liason that she's falling now with some degree of regularity, several times a day now, and right in the middle of our conversation, we both heard a loud crash. Mom's leg muscles failed, and she fell so hard and fast, she destroyed the metal toilet paper holder before crashing to the hard tile floor and becoming trapped between the wall and the toilet. I tossed the phone to the side, lifted her out of her prison, and helped her finish her business before getting her safely back to her bed. It's difficult to watch her decline, to watch her struggle, to watch her hurt herself. In her heart, she's so strong and brave, but I know she's heartbroken having to rely so heavily on me. There's a certain sad look in her eyes every time I pick her up off the ground. And she apologizes so frequently, no matter how many times I tell her it is my honor and joy to serve her in this way.

By the time I got back to the liaison, I was in tears from the whole experience. When I picked the phone up again, she asked me, "Who helps you? Do you have family helping you?" Nope, no I don't. My mom's friend Cheryl is our biggest support, but other than that, it's really just us. All of our relatives live elsewhere, and they all have their own lives to live. It's cool, though. There's no obligation to show up here and to help out. Even if they were interested in helping, a few of my family members would come with so much of their own personal drama that it's a relief to me that they're far away. I'll lift Mom off the ground all by myself a hundred times a day just to avoid dealing with that brand of nonsense. I think what troubles me the most is that it seems so many of her friends (coworkers, church pals, CR sponsees, etc.) and relatives -- people she's always considered herself close to, people she's sacrificed for -- are so consumed with their lives that they don't even attempt to bother with brief visit or a short phone call. They're all just gone, not willing to deal with her dying, and that's what bothers me the most. It's that sort of thoughtless, careless, selfish behavior that I find myself having to check my heart about. Every part of this experience is work, and as in most hard situations, most of the works seems to be internal.

Though her isolation is frustrating, it's not entirely unexpected. I read On Death and Dying and Leaning Into Sharp Points before she moved in with us, and both authors prepare caregivers for this kind of isolation. The surprise again is just that it happened so fast. Writer Paul Kalina quoting hospice documentary filmmaker Jen Peedom writes, "'By and large, Western culture doesn't have processes for dealing with death... There's a funeral and then... after a month, friends expect you to get on with it and then avoid you [if you don't]. I think that we are afraid of death; it makes us feel uncomfortable and confronted and we're not given the support and structure.'" It would just be nice if there were more opportunities for respite and support. It would be even nicer if she didn't have cancer and we didn't have to deal with this at all. Alas, she does, and this is now our combined journey.

I'm taking comfort in God's word, knowing our family has taken on His charge to care for my Mom as her time on this Earth comes to a close. As we continue walking in obedience, I know He will continue to provide us with all we need whether it be supernatural strength, abundant grace, or durable medical equipment. Above all, may we honor Him as we continue to show mercy to one another here.

"And behold, a lawyer stood up to put him to the test, saying, 'Teacher, what shall I do to inherit eternal life?' [Jesus] said to him, 'What is written in the Law? How do you read it?' And he answered, 'You shall love the Lord your God with all your heart and with all your soul and with all your strength and with all your mind, and your neighbor as yourself.' And he said to him, 'You have answered correctly; do this, and you will live.' But he, desiring to justify himself, said to Jesus, 'And who is my neighbor?' Jesus replied, 'A man was going down from Jerusalem to Jericho, and he fell among robbers, who stripped him and beat him and departed, leaving him half dead. Now by chance a priest was going down that road, and when he saw him he passed by on the other side. So likewise a Levite, when he came to the place and saw him, passed by on the other side. But a Samaritan, as he journeyed, came to where he was, and when he saw him, he had compassion. He went to him and bound up his wounds, pouring on oil and wine. Then he set him on his own animal and brought him to an inn and took care of him. And the next day he took out two denarii and gave them to the innkeeper, saying, ‘Take care of him, and whatever more you spend, I will repay you when I come back.’ Which of these three, do you think, proved to be a neighbor to the man who fell among the robbers?' He said, 'The one who showed him mercy.' And Jesus said to him, 'You go, and do likewise.'" -- Parable of the Good Samaritan, Luke 10:25-37 ESV

"Religion that is pure and undefiled before God, the Father, is this: to visit orphans and widows in their affliction, and to keep oneself unstained from the world. My brothers, show no partiality as you hold the faith in our Lord Jesus Christ, the Lord of glory. For if a man wearing a gold ring and fine clothing comes into your assembly, and a poor man in shabby clothing also comes in, and if you pay attention to the one who wears the fine clothing and say, 'You sit here in a good place,' while you say to the poor man, 'You stand over there,' or, 'Sit down at my feet,' have you not then made distinctions among yourselves and become judges with evil thoughts? Listen, my beloved brothers, has not God chosen those who are poor in the world to be rich in faith and heirs of the kingdom, which he has promised to those who love him? But you have dishonored the poor man. Are not the rich the ones who oppress you, and the ones who drag you into court? Are they not the ones who blaspheme the honorable name by which you were called? If you really fulfill the royal law according to the Scripture, 'You shall love your neighbor as yourself,' you are doing well. But if you show partiality, you are committing sin and are convicted by the law as transgressors. For whoever keeps the whole law but fails in one point has become accountable for all of it." -- James 1:27, 2:1-10

Moving Day for Mom

The master houses a hospital bed, and our game room holds a king. We have a full storage unit and an empty garage. Trucks have been loaded and are presently en route. Mom is moving in with us today.

Come to Me

Being a mother to many little ones is occasionally wearisome. Being the daughter of a dying parent is always heartbreaking. Being sandwiched between the two is unbearable at times. "Come to Me," a song by our worship pastor Michael Bleecker, has been a salve to me, like water poured on parched ground.

"Come to me, all who labor and are heavy laden,
and I will give you rest."
Matthew 11:28



Available on iTunes on June 22.

On Suffering

Today, my friend Amy linked to a podcast of our pastor's wife, Lauren Chandler, sharing her thoughts on God in the midst of suffering. Our pastor, Matt Chandler, was diagnosed with a brain tumor three years ago, and Lauren relays how prior experiences (miscarriages, in particular) prepared her heart for hardship and helped her personally and intimately know how she could rely on God during the storm.

I've often thought the same thing -- how our season of deep suffering prepared us for our current struggles. Dealing with terminal illness and being in "the valley of the shadow of death" is difficult still, to be sure, but I'm not afraid because I know -- I really, really know -- that God is with me, comforting me (Psalm 23). Actively, presently, right here by my side comforting me. How? Through His Word -- particularly His promises, chronicles of His character, stories of other saints that He's carried through dark and difficult times -- through personal prayer and worship, and by the loving actions and prayers of those walking this road with us.

The cancer in my mom's body is seemingly unyielding, but in Matt and Lauren's situation, the cancer is gone. Author Jeannie Allen interviewing Lauren asked, "How do you not live in fear [that is will come back]? What does it look like for you to take every thought captive and not go to the worst place?" Lauren replied, "[By] just being grateful for today, being focused on today, and realizing that the Lord has given me grace for today. Not getting ahead of myself, and not getting years down the road or coming up with a Plan B, but just trusting Him for each day because who knows what tomorrow is going to hold for any of us. We make plans like we did before and we just hold them very loosely."

Again, I relate to much of this. Though Mom's cancer is still present, though it seems to be moving to the point of chemo-resistance, and though hospice care is on the horizon, I have what I need, the grace I need, to get through right now and all of each day. When my sweet little Gracie collapsed on me recently, crying, asking why our lives couldn't be "normal," this was my response to her. This is our normal, and God is present here, giving us manna for this day and this day alone. When we get to tomorrow or to a month from now or to that dark night of the soul, there He'll be with what we need for that time, too.

I'm not saying that this journey isn't hard because God is with me. I'm sure Shadrach, Meschach, and Abednego felt the heat of the flames they were in, though the Lord was present with them (Daniel 3). I've felt the pressure of being sandwiched between many children and a dying mother. I've been sad and weary, I've felt frustrated, I've lost my cool, I've shed plenty of tears, and I've applied thirty pounds of chocolate straight to my waistline over these last fifteen months. I'm absolutely, 100% not some kind of spiritual giant who has it all together, but though I'm human and I've faltered and struggled, "I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate [me] from the love of God in Christ Jesus our Lord" (Romans 8:38-39).

Lauren continued by discussing God's sovereignty even in suffering. Though we may not understand why we're suffering, she reiterates the fact that there is such a peace in understanding that God is in control of all things, even the suffering we're experiencing (Job 1). She personally recognizes the limits of her understanding, of all of our understanding, and focuses on the character of God, reiterating that He is good (Psalm 136:1) and does what's best.

This is where our rest is -- knowing God the Father, really knowing Him. Looking to His word to know who He is and what He's all about rather than relying on what the world would say about Him. Looking to Jesus specifically to know the Father (John 10:22-30), understanding His character and mannerisms to understand the Father. No matter what we're facing, God is a kind and loving Father, present with us always. No matter what we're facing, "let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God" (Hebrews 12:1b-2).

Forever Reign by Hillsong

Click Here
to listen to Lauren's thoughts on suffering.

Follow Lauren on Twitter

image source
image source

Maybe One Day, Someday...

Things for my mom have grown progressively more difficult. Because of the movement of cancer cells to her brain, her oncologist was ready to end treatments when we saw him a couple of weeks ago. He even submitted us for a hospice referral, and I began interviewing agencies as we waited to see him. During the appointment where he planned to tell Mom that treatment was over, he conceded to another couple of chemo rounds because there was no clear evidence of tumor growth on the scans of her lungs. No shrinkage per se, but no growth. Even with a movement to the brain, he couldn't definitively say if her lung cancer had reached the point of being chemo-resistant, so two more treatments were permitted.

Mom immediately began infusion therapy, and while she managed the chemo well, she had the injection to increase her immunity and was nearly immediately bedridden. She couldn't stay awake for more than an hour or two, she couldn't speak intelligibly. She was totally out of commission from Saturday until Tuesday when we did an in-home hospice interview. She improved a bit over the next couple of days, and was able to visit with Bub, Gracie, and my aunt who was in town from Kansas. On Friday, though, she was sick again -- this time with a bug she picked up somewhere -- and was again completely wiped out.

By the weekend, she was no longer walking well and she'd grown increasingly more confused, and by Sunday night, her brain was misfiring again as it had done in November when she reacted negatively to brain radiation. We debated another run to the ER, but she was safe in her home and not hallucinating or trying to harm herself, so I opted to wait until morning to call the oncologist directly instead of spending hours and hours doing a history workup with a doctor entirely unfamiliar with her care. The next morning, after some debate with the oncology nurse about what we were experiencing, she was admitted to the hospital for testing and observation. In the end, it was determined that some medications were interacting, causing her blood pressure to drop to 87/59.

Tuesday, I was given the rundown of another new medication schedule, and Mom was released to go home. Since, she's been struggling physically, mentally, and emotionally. She's growing weary of all of this. She doesn't want to be sick. She's beginning to feel the weight of knowing she won't escape this, not without a miracle. She's losing her freedom. She feels she's become a burden to everyone.

As I think about all she's gone through, all she's going through, all we're all going through, I feel so sad. I personally don't have a problem with death, nor does she, but I would hate to lose my independence along the way. Watching her lose hers a bit at a time -- that's the hardest part to all of this for me.

Because of this loss of independence, she'll be moving in with us in a few weeks. The whole idea is very hard for all of us. Mom and I don't typically cohabitate. I moved away from home just after my eighteenth birthday, and other than a brief time James and I rented a room from her just after we married, we've lived apart for all these years. Sharing a home is just not something either of us ever wanted to do. Throughout the course of her illness, we've invited her to move in a number of times, but for all kinds of reasons, she wanted to stay where she was. A change in circumstances, though, forced her to devise a new plan, and after considering all of her options (even a state-run nursing home), she's coming here. She's worried about being a burden to me, and while she won't be that at all, frankly I am concerned about how it will all work out. I could use a few sun-stopped-in-the-sky Joshua-type miracles to get it all done right now, even before she moves in. Still, I know her coming to live here is God's plan for for our family, and I'm moving forward completely aware that while I have no special skills and am already totally sapped of strength, "when I am weak, then I am strong" (2 Corinthians 12:10). I'm counting on God to provide what we need to get through each day in a way that brings Him glory.

Regarding relocation preparation, we spent the weekend taking things from our garage (holiday decorations, clothes the littlest little ladies have yet to grow into, etc.) to a storage unit in order to make room for my mom. Today, I spent a few hours at her house boxing up and moving over some of her belongings. Some of her things will go into the storage unit, some things will come to our house. We have a limited amount of room, but we believe having many of her possessions under our roof will make her feel more settled here -- more like this is her home, too. Not just somewhere she's crashing.

But then there's that -- all these unimaginable aspects of her decline, all kinds of situations or possibilities that make this not-so-great experience even worse. This sorting and packing is a pretty awful part of an already challenging losing-freedom-and-independence process. When you've surrounded yourself with the same belongings for years and years, trying to decide what to squeeze into a small space, deciding what's really necessary for everyday living, is strenuous. As we emptied china hutches today, Mom told me she'd already gone through her closet to sort clothes for donation. She got rid of nearly all of her winter clothes because living to see another winter is very improbable. She doesn't need three coats anymore because even though one is dressy and one is causal and one is just cute, she'll probably be too dead to wear them. How is that knowledge not all-consuming?! How can one finite human mind be aware of a ticking clock and not just shut down? I don't know -- it's all just so much to bear.

I don't have any deep explanation for any of this -- we're simply trying to get by. We're in "survival mode," as they say. We're putting one foot in front of the other, getting from one meal to the next (if I remember to thaw something out, that is), moving from one appointment to another appointment, one treatment to another treatment, feeling thankful for the moments we have to spend together, even if they are strange and stressful. Maybe one day, someday, this will all make some kind of sense.

"But he said to me,
'My grace is sufficient for you,
for my power is made perfect in weakness.'
Therefore I will boast all the more gladly about my weaknesses,
so that Christ’s power may rest on me.
That is why, for Christ’s sake,
I delight in weaknesses, in insults, in hardships,
in persecutions, in difficulties.
For when I am weak, then I am strong."

-- 2 Corinthians 12:9-10

Hello, Summer!

My sweet big kids have finished their fifth grade year, and both are officially "middle schoolers." I really have no idea where the time has gone. They completed the last of the computer work for their math curriculum this morning bringing the school year to an official close. After finalizing the gradebook, I dished out ice cream sundaes to celebrate. We then had a homeschool awards ceremony where I hummed "Pomp and Circumstance" while the kiddos (still in their pajamas) received homemade certificates decorated with stickers by their toddler sister. It was such good fun, and now our much needed break ensues.

Homemade Homeschool Awards
We are, however, not planning to take the entire summer off. We're going to try our hand at a bit of year-round schooling. The kiddos and I are going to work on the Bible Bee Summer Program. I've been struggling to teach scripture memory, so I'm super excited about this program. I've heard good things about Bible Bee as a whole, and I hope the program helps us all. The fun summer events planned for us are a real bonus. (Summer registration is open for only a few more days -- sign up now if you're interested.)

In addition to working on the Bible Bee, the kids will continue taking in-home piano lessons through most of the summer. They're also ready to begin working on the French and Spanish language programs we ordered from Bilingual Books at the Arlington Homeschool Book Fair. By the time the Texas heat is too much to bear (early July), I think we'll be back in full swing. My mom will be moving in with us by June 23rd, and the three littlest ladies are still on a fairly regular nap rotation, which means we will spend much of our summer right here at home. We might as well be productive, right? Plus, when extra math lessons are assigned at each "I'm bored," I think the kids will be quick to entertain themselves.

We took a last minute trip to Disneyworld last month, so we're not planning any travel this summer. Despite not having travel plans and working ahead on school, we'll still have a fun summer. We have season passes at Six Flags over Texas, so we'll spend a few days in Arlington. We'll also participate in some reading programs following the Mensa for Kids book list. We'll go to the lake and to the park. We'll do some craft projects. We'll ride bikes and take some long walks. We'll visit the neighborhood pool.

What are your summer plans? Anything exciting?

Easter at Disneyworld

A recent brain scan revealed cancer has moved into my mom's brain. Because Oat Cell Carcinoma is so aggressive, she'll have Gamma Knife radiation very soon in an effort to keep encroaching symptoms at bay. The tumor cluster is right in her personality centers, so we've been warned about personality changes being one of the most significant risks of the procedure. Our response: head to Disneyworld.

We cashed in airline miles for flights, then booked a last minute trip to the parks. We booked the trip so last minute (less than 48 hours before arrival) that we weren't even allowed to purchase the meal plan (although paying cash for meals worked out to be cheaper for our busy bunch). My best friend Marcie planned to keep Elleigh and Piper while we were away, so James met her in Oklahoma City while I spent the day with Mom and the radiation oncologist hashing out last minute procedure details. Then, we flew away from home, hoping to afford Mom a bit of fun and distraction from the painful reality of her prognosis. We stayed at Port Orleans Riverside, and we visited MGM Studios, Epcot, and Magic Kingdom.

Hope Beyond This Life

A tumble early Sunday morning led to a large goose egg on the head and an ER trip for my mom. The ER trip led to a short hospital stay for observation, the stay led to various routine tests, and a routine MRI this morning revealed that the cancer my mom has been battling all year has made it's way into her brain. We meet with her radiation oncologist this week to see if there are any remaining treatment options available. Feeling especially thankful today we have hope beyond this life...

"If in Christ we have hope in this life only, we are of all people most to be pitied. But in fact Christ has been raised from the dead, the firstfruits of those who have fallen asleep. For as by a man came death, by a man has come also the resurrection of the dead. For as in Adam all die, so also in Christ shall all be made alive... For this perishable body must put on the imperishable, and this mortal body must put on immortality. When the perishable puts on the imperishable, and the mortal puts on immortality, then shall come to pass the saying that is written:

'Death is swallowed up in victory.
O death, where is your victory?
O death, where is your sting?'

-- 1 Corinthians 15: 19-22, 53-55 ESV

In the Gloaming

I remember lying in front of our console TV as a small child, absentmindedly watching old shows with my mom. She'd have me tune in to programs like Perry Mason or The Waltons as she'd do her sitting-down chores -- folding the laundry, for example. I was the little blonde-haired knob turner back before we owned our first remote control.

Personally, I rarely watch TV. I watch American Idol when in season, and I occasionally watch shows on Netflix or on demand when I absolutely have nothing else going on. I rarely ever watch anything in real time, not even Downton Abbey, a show I found on Netflix and would watch in real time -- if I bothered to discover when it actually airs instead of just setting the DVR to record it. The point here: TV viewing matters very little to me. However, like my mother, I prefer to fold the laundry while tuned in to something mindless, something I don't have to focus deeply on, but something entertaining enough to distract me somewhat from the awful, horrible, terrible, neverending task at hand.

During laundry time last week, I tuned to The Waltons just as my mother had me do all those years ago. Warm towel in hand, I paused on a twilight scene of children scampering about in a clearing while the adults lazed on a long farmhouse porch, resting after a hard day's work. The imagery was captivating, and I took special note when the grandfather referred to that slipping away of the day as being "in the gloaming." More clearly defined, the phrase describes the period of decreasing daylight from late afternoon until nightfall.

One year ago, my mom was diagnosed with Oat Cell Carcinoma, an aggressive, minimally treatable form of small cell lung cancer. The rounding oncologist at the hospital where she was diagnosed essentially told her to pack it in -- she'd have just a few weeks of life left, at best. I promptly gave that oncologist a stern talking-to, then researched and connected my mom with another hospital group and a more positive, more aggressive oncologist. A year later, she's still living.

In November, my mom began undergoing prophylactic brain radiation. Studies have shown the progression of this cancer to the brain will slow if the patient radiates in advance. Once the cancer has metastasized to the brain, there are no available treatments, treatments elsewhere in the body make no sense, and the patient is really in a period of waiting for the end. So, she began having the scary, risky brain radiation, and after her second treatment, she lost her mind. One minute, we were having a normal, lucid conversation; the next moment, she was hallucinating and trying to eject herself from my rapidly moving vehicle. While rushing her back to the hospital, I called a few people to say their final goodbyes before her mind was entirely gone, then I spent the evening demanding doctors hear me and treat her.

Hours alone with my waning mother and my nursing baby were trying. Woman at the end of life, baby at the beginning, and me, stuck in the middle of the press. I had to give orders for scary treatments that were necessary to ensure her physical existence, even if she was already gone mentally. As I tried to explain to my frantic, lost-within-herself mother all the painful things her care team was doing to her, the little blonde-haired knob turner within me reeled. Then, even after those hard choices, more than once her body responded as if it had had enough. Unconsciousness overtook her. I was certain she wouldn't last through the night. When she was finally physically stable enough to be wheeled from the ER to the ICU for more invasive care, I couldn't go with her -- nursing babies weren't allowed on the floor. I left the hospital certain I'd seen my mother alive for the final time. Fortunately, I was wrong.

Those hours with my mom that November night were some of the longest, loneliest of my life. James was with me at the hospital for as long as possible, but he had to leave to care for our children at home. All of our other relatives live elsewhere, but even if we were geographically closer, the reality is only two or three people would be bothered to come to the hospital and sit with me while my mom slips into eternity. Though she pulled through that particular experience physically and regained her complete mental capacity, it occurred to me just how quickly the end could (and likely will) come, how hard managing it all will be, and how my comfort even in this must come from Christ alone.

The first days after diagnosis were very overwhelming, just as all the days since have been. All of our conversations are peppered with final thoughts and final plans. Not once in this year has there been a day spent together that was just innocent and not full of intentional moments, and while intentional moments are good, they are intense. Every experience might be the last of its kind. We are in the gloaming, waiting for night to fall.

Do Not Go Gentle Into That Good Night
by Dylan Thomas (Audio)

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.


"I lift up my eyes to the hills.
From where does my help come?
My help comes from the Lord,
who made heaven and earth.
He will not let your foot be moved;
he who keeps you will not slumber.
Behold, he who keeps Israel
will neither slumber nor sleep.
The Lord is your keeper;
the Lord is your shade on your right hand.
The sun shall not strike you by day,
nor the moon by night.
The Lord will keep you from all evil;
he will keep your life.
The Lord will keep
your going out and your coming in
from this time forth and forevermore."

Psalm 121:1-8 ESV


Photos courtesy of Jen Hair at Wild Hair Photography

Mischief Makers

"Grandparents are there to help the child
get into mischief they haven't thought of yet."

-- Gene Perret


Nanny with Elleigh, three months old

Making Mother's Day Memories

My mom came over to spend Mother's Day weekend with us. Since she now has terminal cancer, she's being very intentional about spending time with friends and loved ones, and spending Mother's Day weekend with me and with a large portion of her grandkids just fit. We went to church and dinner on Saturday night, then had a lazy Sunday morning opening gifts and going out for breakfast. I had flowers delivered to Mom's house before her weekend with us, and James and the big kids put together the "Grandma & Me" Hallmark Conversation Book for her to open on Sunday. Hearing the kids share special memories about their Nanny was precious, and Mom really treasured the gift.

James and the kids showered me with gifts and goodies, and Mom gave me the "Close to Me" Willow Tree figurine. The card insert read, "Let us always remain close. These figures stand for the bond that no distance can tear apart." She said when she saw it in the store, she just sat and cried, and when she gave it to me, I did the same. My relationship with my Mom hasn't always been perfect, but we've always been together, and the fact that she'll die sooner than any of us expected breaks my heart. I will miss her more than anyone in the world, and she insists that she'll miss me even when she's in Heaven -- though I seriously doubt that. Having Mom here to make Mother's Day memories with us was very special, but I sure wish things were different and we were together this year because we love to celebrate together, not because it might be our last opportunity.

Making Mother's Day Memories

The Cancer Journey: The Big Hair Cut

Mom's hair began falling out about a week before her second round of chemo. She'd had her hair cut from longish to quite short in anticipation of this, but we didn't expect it to start falling out so soon. We thought after the second or third round, not the first. Hopefully, this means the chemo is working well.

She told me she was standing outside in the heavy Texas winds and noticed her hair blowing away. She said it felt like she was blowing away. It was time for her hair to come off. When I went to shave her head, it astounded me just how much hair she'd lost in the few days since I'd last seen her in person. Though her hair had been cut short, it was still quite thick at our last visit. When I came over this time, her hair was so thin and large clumps were missing out of the back.

We took a few pictures before the big hair cut, as well as a couple during and after. We all cried during the cut, but I felt a bit better after it was done. Mom has been working hard to adjust. She's learning how to tie and wear scarves.

Nanny with the Kiddos

Mom with her foster sons, Dennis and Matt

Mom and Me

The Big Hairdo

Beautiful Baldie

A New Sense of Sorrow: My Mom's Battle with Cancer

The day we came home with Elleigh, my mom went to the hospital. The week before, she'd had a sudden onset of a kind of paralysis in her legs. They felt heavy, she couldn't move them well, and she collapsed at work. Her symptoms weren't anything so concerning that she went to the hospital at that time, and her doctor didn't feel concerned enough to send her to the hospital later in the day when she came into the office. The doctor adjusted some of her blood pressure medication and sent her home to rest for the weekend, and on Tuesday, the doctor told my mom she thought maybe she'd had a slight stroke. She'd need further tests to confirm which would be done on an outpatient basis, but a headache later that evening sent her to the ER. She was admitted and tests began the next day.

After a whirlwind week of tests and various false diagnoses, two biopsies and some other tests confirmed my mom has Oat Cell Carcinoma with a comorbidity of Eaton Lambert's Syndrome. Oat Cell Carcinoma is a very aggressive type of small cell lung cancer. "SCLC is the most aggressive form of lung cancer. It usually starts in the breathing tubes (bronchi) in the center of the chest. Although the cancer cells are small, they grow very quickly and create large tumors. These tumors often spread rapidly (metastasize) to other parts of the body, including the brain, liver, and bone. Almost all cases of SCLC are due to cigarette smoking. SCLC is rare in those who have never smoked" (BaylorHealth.com). Eaton Lambert's Syndrome is a neurological disorder that accompanies 4% of SCLC diagnoses, and this is what caused the numbness in her legs that still persists.

By the time she got her diagnosis, we had such a sense of mistrust towards the doctors at the hospital she was at. I did some research and had her care transferred into the Baylor Health Care system. We hooked her up with an oncologist who has extensive experience dealing with Oat Cell Carcinoma. We really like him and his approach to this type of cancer. She's already undergone her first round of chemotherapy and has another round scheduled for later in the month. After a couple of rounds, the radiologist will try to determine if he can add radiation to her treatment plan. Surgery is not an option with this type of cancer.

I've been very overwhelmed by this diagnosis. The reality is this cancer will be part of my mom's death. There's no cure for this cancer, and the treatments they do merely buy time. On a positive note, her cancer was caught earlier than it typically is, so we're hopeful she has years to live instead of months. Though we all know death is imminent, it's been sad to watch her come to terms with a timeline. It's also been sad to watch a very strong, independent woman reach a point where she has to physically rely on people -- for rides, to help her off the ground when she falls, etc. The speedy progression of this disease has also been overwhelming as just thirty days ago, she was working full-time and leading a busy life. To so quickly be so ill is a challenge.

I've been meaning to update for a while, but I thought if I waited, someone would come along and say she'd been misdiagnosed and all would be well. That hasn't happened -- and it won't.

Time to deal with reality, I suppose.

As for where I am, I'm very sad about this cancer, and I'm very sad about the fact that every day my mom lives will be one of her last. Anything we do is tainted with the knowledge that this could be the last time, or that we're prioritizing because she's dying. The reality of all she'll miss and how I'll miss her absolutely consumes me from time to time. It's been a challenge to know how much to share with the kids. We've been honest, but reassuring so they won't feel scared, but then they struggle to understand my random tears. They're not sure what to think, and we're not sure how much to tell them. God's grace is enough even in this, I just wish I didn't have to know that for sure.

"The difference between shallow happiness and a deep sustaining joy is sorrow.
Happiness lives where sorrow is not.
When sorrow arrives, happiness dies.
It can't stand pain.
Joy, on the other hand, rises from sorrow and therefore can withstand all grief.
Joy, by the grace of God, is the transfiguration of suffering into endurance,
and of endurance into character,
and of character into hope --
and the hope that has become our joy does not
(as happiness must for those who depend upon it)
disappoint us."
-- Walter Wangrin, Reliving the Passion

"The things we try to avoid and fight against
-- tribulation, suffering and persecution --
are the very things that produce abundant joy in us.
Huge waves that would frighten the ordinary swimmer
produce a tremendous thrill for the surfer who has ridden them.
"We are more than conquerors through Him" IN all these things
-- not in spite of them, but in the midst of them.
A saint doesn't know the joy of the Lord in spite of tribulation,
but because of it.
Paul said "I am exceedingly joyful in all our tribulation."
-- Oswald Chambers, My Utmost for His Highest (Rom 8:37, 2 Cor 7:4)