Wednesday, July 25, 2012

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

Tuesday, July 24, 2012


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

Wednesday, July 18, 2012


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

Sunday, July 15, 2012

Event Cancelled -- More on the Bible Bee

Things have not improved for us with regards to the Bible Bee study. Lessons still take a lifetime, which the kids are now growing frustrated with, and I'm still no better at teaching them memory tricks. They've gotten a few of the scriptures down, but are having a hard time with others. I've added some silly moves (like they do with the songs at church), and while the kids think it's hilarious to watch me make a fool of myself for their benefit, it seems like it's only good for a laugh and little more. I was hopeful we'd be able to attend the local event to connect with other parents doing this summer study. I really needed some tips and advice, and the kids needed to see they're not the only ones (I hope!) whose Mom has no idea what she's doing. We were also looking forward to a little fun after all this work.

Unfortunately, the local event was cancelled at the last minute and tentatively rescheduled for the day that we're supposed to have a dress rehearsal (something else I'm confused about and needed direction on). At this point, I feel lost and beyond frustrated. My plan now is to put on the brakes. I should stress that the materials are fantastic and the kids are learning loads, they're just a bit intense (for us) for a quick summer study. We'll continue with our Sword Study, but we're going to devote only a couple of days a week to it instead of the whole week, and we'll get back to our regular method of study using the Bible Bee material as our foundation until we get through the book. In fact, I think this would be a great option for people who needed a good Bible curriculum to follow, even if they weren't interested in the actual Bible Bee. As for us, there's no way that we'll be ready for any kind of competition anytime soon, but that's okay. We've gained a great deal from the program, so I already feel like we're winners.

Wednesday, July 11, 2012

Little People for the Little Ladies

Playing with Little People is a favorite pastime for all the little ladies. We didn't have Little People when our big kids were small, but I snagged a set at a garage sale when I was pregnant with Brystol. Since adding two more children, I've added probably three more complete sets (more garage sale finds) and a few spare pieces and accessories. I modified our old TV cabinet, adding shelves for Little People houses, accessories, and storage bins. Every time it's opened, the ladies come running (or crawling) over to play. All three of them snag their favorite figures and play with (or fight over) them for a good long while.

Sunday, July 8, 2012

Struggling to Study -- A Bible Bee Update

So, we've progressed with our Bible Bee Study. I don't know if we were just gung-ho to begin with, or if the lessons were easier, but the further along we've gotten, the more challenging things have become. Even if I'm standing over the kids, we can no longer make the "twenty minutes a day." I'm confident the change has not been in us -- at least not in anything we've changed or the way we're approaching the study. I think it's just a deep, progressive study that requires much more discipline than we realized (or wanted, at least during the summer). It also doesn't seem to allow any wiggle room for the things kids to in the summer, like go to camp or on vacation. We still haven't caught up from their recent week away!

The kids are troopers, not complainers, and so while the lessons are taking two or three times as long (even before drilling the memory verse cards), they're still enjoying it for the most part. Gracie says the lessons are long and there's a lot of writing to do, but they're still fun. I'm having less fun, though. I'm so busy helping -- and encouraging -- them do their work, then James and I spend time in the evening drilling stacks of memory verses. To me, this level of work is way more than I wanted for a summertime program. Maybe that seems awful to say about the study of God's word, but we generally approach studying the Bible in a bit of a different way.

We typically read aloud or do individual reading for personal study, but we go deeper by doing a bit of expository study, breaking God's word apart by understanding how it defines and describes itself. We don't struggle with reading God's word, or even understanding it. Where I struggle personally is teaching the kids how to hide the Word in their heart, or teaching memory tricks. I was hopeful this program would help me do that for them, but I don't think it's helped really. I think the program has just further exposed my teaching shortcomings, and has added pressure where we didn't want any. I haven't passed these frustrations along to the kids, though. We're still working with them, but we all feel grossly unprepared for a competition of any sort, and we don't know what to do to change or improve. I'm hopeful we can find some help at the upcoming local event, either from the event host or from other parents.

Wednesday, July 4, 2012

Happy Independence Day

We celebrated our Fourth on the third. The little ladies are scared of big noises, and my mom is growing increasingly weaker, so I wasn't planning to go anywhere. However, James got off work early and graciously offered to stay home so I could take the big kids out to watch fireworks. "You need a night out," he said. Sweet man. While Daddy endured a Yo Gabba Gabba marathon, the big kids and I went to a nearby town for dinner and dessert, then caught up with friends to watch the fireworks show.

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