Why I Am Not Afraid of COVID

Why I Am Not Afraid of COVID

Before you get into a tither, let me START by saying it is fully rational to be wise AND not fearful. This is not a binary choice between being lawless and cavalier and being up in the night with panic; there is a third option.

We are where we are, and the only thing to do is hunker down and let it pass. If you pay any attention to the numbers in Italy and New York, you may come to my same conclusion as me: Proximity matters. The closer the people are, the more the people will get sick.

However, I have been living with rubber gloves, Clorox wipes, Lysol spray, and hand wipes in my car for a long, long time. That’s what life with family members with terrible diseases is. Perhaps that adds to my steady emotional response to the Coronavirus.

Here are some other reasons:

We already live with worse. My mom has Progressive Supranuclear Palsy. It is a terrible neurodegenerative disease that presents to the outside world a lot like ALS. She was, on more than one occasion, diagnosed with ALS.

We have been in multiple doctors’ offices receiving news that literally makes the room spin. We have been told that it doesn’t matter what is wrong because there’s nothing that can be done. We have been told more times than I can count that there is no cure and no medicine and that it is a matter of when, not if, this will kill you.

Because she was diagnosed with ALS once, and “not ALS yet, but it will be” once, I feel connected to that community. I feel their pain as they are screaming for an incredibly hopeful treatment, Nurown, to be approved and used on a large scale; but their shouts are currently being drowned out by people hoarding toilet paper.

To many, this response seems out of proportion.

I follow the numbers. I check the progress of the disease on worldometers.info daily. The other day there were 452 new cases of COVID-19 in the United States.

That was just over 8 people per state. I live in Texas. It’s a big state.

***Edit: It turns out my son sometimes reads my blog. That is a surprise! It turns out he does not take my facts at face value without researching himself. This is NOT a surprise. He brought up a valuable point: The WORLDOMETER site updates daily. Clicking the link now gives much larger numbers than when I wrote this. The numbers swing wildly. I am still not afraid.

So far there have been 311,357** (updated) documented cases in the United States, with 8,452** (updated) deaths. In no way am I minimizing those deaths (each life matters) but the CDC estimates that between October 1, 2019, and March 28, 2020, there have been between 24,000 and 63,000 deaths due to influenza.

My mom was originally diagnosed with ALS in December of 2017. The 2017/2018 flu season DID scare me. It seemed so much deadlier to me.

The death rate of COVID is simply not that high. 50,000,000 people worldwide died of the Spanish Flu in 1918. 675,000 of them were here in the United States. In 2009, we had H1N1–the Swine Flu. “The Centers for Disease Control and Prevention (CDC) estimates that swine flu infected nearly 61 million people in the United States and caused 12,469 deaths. Worldwide, up to 575,400 people died from pandemic swine flu.”

Perspective.

I didn’t have a life before this. We already homeschool. There have been changes at church in the preaching that made it a struggle for my family, so that’s doesn’t feel like a real loss. Most of my time each day is spent at home or going to doctors appointments or therapies for my parents or my daughter, so there’s just not much that has changed.

My favorite pastime is going with my husband for appetizers and a drink to watch the Astros games. The Astros are currently the least liked baseball team–maybe ever. I can’t be sure their games would be ON in any restaurant…but we still miss them.

I do need to get a life, but now I get to blame everyone else for not having one. BONUS!

I see so much good happening. Watching the Navy hospital ships Comfort and Mercy pull into California and New York, bringing help and room for patients was breathtaking.

Watching companies shift gears to produce things to help in the crisis is the American spirit I want to grow. The New England Patriots’ diesel truck filled with 1.2 million face masks to be delivered to New York hospitals was fabulous. Restaurants are donating food. People are sewing masks. Bible verses are everywhere.

There is so much to gain by families spending more time at home. I hope we read more; use technology less; take time to think about what we want our lives to be. This can be a magic moment in so many ways, if we let it.

I think the responsibility for those who are at greatest risk, lies mostly with those who are at greatest risk. Hold on.

Take a deep breath. Don’t let yourself get too upset, yet.

I saw an Instagram post saying something along the lines of, “MY MOTHER IS NOT DISPENSABLE,” in response to the idea reopening businesses.

If we don’t reopen businesses, MANY, many businesses will die.

This person’s fear was that if we DO reopen businesses, her mother would die.

My youngest was born with special needs. She was medically fragile and highly susceptible to illness. The responsibility to keep her safe was ours–my husband’s and mine. The onus was not on the rest of the world to cease normalcy because our life was no longer normal.

Those who are the most at risk need to take the responsibility for their own safety seriously.

That being said, we all need to be respectful.

My college age daughter spent her spring break in New York state–ground zero for COVID-19 US. She was also exposed to someone who was exposed to someone who tested positive.

When she came home from college, she self isolated for two weeks because she does have a sister with special needs and medically fragile grandparents. She, at 18, behaved in the most respectful way possible because she believes she has a responsibility to the world around her.

She’s awesome.

Earlier this week my Dad fell in the middle of the night. Normally my husband goes and gets him up, but this time he seemed to be in considerable pain, so my husband called 911.

I headed over and got to the gated community just behind the ambulance. We were having trouble getting the gate open, so I took a moment to chat with the paramedics. “My dad has to be really, really hurt before I will take him to the ER,” I said. “His doctor’s office has an x-ray and a lab to do blood work, so if it is possible to give him a pain pill and tuck him back in bed, that is the plan.”

They were totally on board.

I am not terrified of the contagion, but exposing an elderly man unnecessarily while also giving potentially overworked ER staff ONE MORE THING to do is something I will try to avoid.

We need to gut it out. We need to keep away from others when possible; wash, wash, wash; don’t touch our faces, which, as it turns out, is THE VERY HARDEST THING about this entire situation; try to support local businesses by ordering take out or buying gift certificates; and PRAY, PRAY, PRAY.

The most vulnerable should completely isolate. The church and friends and family should support that by filling in the gaps for them.

ANYTHING WE CAN THINK OF TO SUPPORT SMALL BUSINESSES we should do. I am in the camp that believes the economy will come roaring back. The people on the front lines, working day and night, will someday stop working day and night and will be looking for food, fun, and some pampering.

Businesses that are currently closed will have to open early and stay open late to accommodate the massive flow of customers. This day is coming.

VERY SOON the numbers of recovered cases will skyrocket. Once they hit 6 digits, the conversation will change. THIS, TOO, WILL PASS.

Let’s simply decide not to destroy ourselves with fear in the meanwhile.

Four March Somethings

Four March Somethings

Each month, my online friend Heather hosts a blog link-up entitled SHARE FOUR SOMETHINGS: Something Loved, Something Read, Something Treasured, Something Ahead. Each month I say I will hook up; each month I don’t.

If an international quarantine and stay at home order don’t take away all my excuses, I will need to face the fact that perhaps I am not being honest with myself about who I am and what my intentions really are.

I don’t wanna do that, so here I go!

Something Loved

I love that my college student daughter is home.

Well, not home exactly. She spent her spring break in New York and has been exposed to someone who was exposed to someone who has tested positive for COVID 19, so she is self-isolating at a mobile home we are in the process of fixing up. But she is close and I have seen her and we are making plans.

Not exciting plans because, well, COVID is the biggest buzzkill of a lifetime. But we are planning on helping the dog learn how to behave well and that is actually a life-changing prospect.

Something Read

My reading is a bit lacking. I admit it.

My daughter and I finished The Penderwicks on Audible. We have begun the Great Illustrated Classics version of Around the World in 80 Days.

I have been listening to/watching podcasts for writers, then popping over to web sites to get to know new authors.

I have, as always, spent most of my reading time on research studies and health articles looking for help for my family.

It’s kinda boring.

Something Treasured

This may sound arrogant, but I treasure the ability to think.

These are fascinating times we live in. The world is both incredibly distant and unified in experience all at the very same time.

I see people posting things online, enmeshed in their own fear, and they don’t actually look into what they are posting or THINK about what things actually mean. Many times in these last days someone has posted something inflammatory.

I then respond with statistics that offer a different way to look at things. The comments are then taken down. People are INSISTING on their own feelings and perspective…facts are secondary.

Ugh.

Something Ahead

A remodeled house.

ALL THE HAPPY HANDS FLAP WITH PRAISE.

I am a wee bit ashamed of my inability to function well in the house we live in. I have never really liked it; I liked what I could see it becoming. And it was affordable.

But there’s no great place to eat as it currently is, and there are too many started–but not finished projects–working toward the BIG remodel. I have been stuck.

I hate that feeling.

But things are significantly underway now, and I couldn’t be happier.

There are now and will be many more moments in the coming weeks to push pause. To think and reflect are valuable things, and I am grateful for this brief moment to do just that.

Day 4

Have you ever seen a toddler that was so out of control it was a scene? Like a train wreck people stare, roll their eyes, and judge? The mom seems oblivious and ferociously defensive at the notion that anything their darling child is doing might be wrong?

That is me, except with my parents.

I am the daughter who is unrelentingly unwilling to acknowledge there might not be hope. The incurable disease might not be cured and the “Progressive” in its title is not a joke. It actually guarantees things are getting worse.

My mom has a terrible disease and lost her ability to talk over two years ago. Last December, she was no longer able to swallow, so she lost the ability to eat and had a feeding tube put in. That transitioned us to needing 24 hour care, and it turns out my father needs it as badly, if not worse.

He falls all the time.

People love to point out any flaw in his memory or thinking. (I, on the other hand, accidentally drove the wrong way down a one-way street this week, so I am gentle with the imperfections of life.)

We have issues with constipation and the unfortunate consequence of overcorrecting.

Recently I talked them into a 5 week time frame of intense therapies and treatments. They will do neurofeedback, hako-med, medical wave, Pulsed Electromagnetic Field Therapy, oxygen therapy, and lower back decompression designed to increase circulation to the brain and body. They will are supposed to be in the pool three times each week. Twice they’ll exercise for an hour, once for half an hour. They will also get weekly massages, once for my mom and twice for my dad.

But things keep getting in the way of my plan. And I hate that.

Yesterday was DAY 4. I took my mom on the two-hour journey to Louisiana for cranialsacral therapy. The plan was to then take her to neurofeedback and then the pool. (My dad had been up all night with intestinal issues and was too tired for the newly-put-in-place program.) All day my mom had looked a little wonky, so when she said she had the chills we changed course and scheduled IV Therapy for her.

I had already made an appointment for my dad, so there they were, side by side getting their particular cocktail of vitamins and minerals and fluids pumped in. The last time I did that for my dad, he didn’t fall for days.

Last night my husband had to head over at midnight and help him off the floor.

Each day I pray to the Lord, asking for HIS help to help my parents. I ask HIM to show me which way to turn.

It’s only Day 4. It is not supposed to be perfect.

I want HIS work in my parents to amaze everyone who thinks I am nuts.

Here’s how it works for me: Any new idea that eases my heart or mind a bit, I consider to be from the Lord. I don’t hear audible voices. I don’t have burning bushes, but if I believe HE is for me (which I do) then I believe that help is from HIM.

And then I thank HIM for allowing my father to have made enough money to pay for the new idea. Then I talk to my parents and if they agree, I consider that HIS work as well. They can be stubborn, old codgers.

Yesterday was only DAY 4. I can look to HIM for a better tomorrow.

2020 Vision

The end of 2019 came in like a wave. Rushing and thrashing, it took my family to new places. Places we didn’t want to be but knew we could not avoid.

A New Year always brings me hope. The opportunities to look fresh and start anew are treasured. Loading up things to take to the Goodwill, extra bags of trash by the can, and the scent of cleaners illustrate my nearly desperate need for a more manageable life.

I am always striving to “get organized.”

One thing I have changed this year is to write my calendar items in pencil.

There, quite simply, is always the possibility of a crisis around the corner. My mom has a terrible disease. My Dad falls like it is his job.

We have caregivers, but that is its own tricky situation. There is a constant balance of living with purpose and throwing plans away to best deal with a situation at hand.

Just the other day I was taking my precious little peanut (who is no longer little) to an appointment that had the possibility of helping me pursue several therapies for her that I am excited about. While I was driving I got a text from my mom that my Dad had fallen.

The caregiver left to get lunch and he was on the floor, unable to get up.

As always, the first call was to my hubby. He was on his way out to the airport. He was willing to turn around, but our son was closer, so I called him and he was off to the rescue.

When my husband called a few minutes later, he was a bit surprised that I wasn’t on my way to my parents’ house. “I need to do this for Ryan. I have to feel like I am moving toward a better life with her, and this could be a big part of that.”

The brutal truth was this:

  • I could not get my Dad off the floor.
  • My son could, and he was on his way.

My father means the world to me, but there was no real benefit to sacrificing the opportunity to move the ball forward for my daughter at that moment. So I didn’t.

Each moment presents choices. I want to choose to invest in the wisest way available, in the priorities the Lord has put before me. Every day is an investment. The results are the Lord’s. The decision to invest obediently is mine.

I am empowered by those truths.

I love my family. I want to do this life well. I want a watching world to see God in a real and powerful way flowing through the pulse of my life. That will be the most effective if HE is pulsing through the flow of my days.

And my choices.

And my priorities.

Thinking About Homeschooling Your Special Needs Child?

I can’t believe how quickly the summer flies by.

I hate that.

I love summer.

And educating my kids is the hardest part of parenting for me.

My special needs daughter had the very best kindergarten teacher in the world. Really, she did. I am not just saying that. This particular teacher is likely, realistically, in the top 1% of teachers in the nation.

She is THAT good.

However, not everyone is that good. The next grade, my daughter (who was mainstreamed in a typical 1st grade class) got her first report card. The entire thing was filled with the grade N/A. Not Applicable.

Gets along well with others? Not applicable.

Follows classroom rules? Not applicable.

Every category didn’t count for her. Obviously, that was not going to work.

When we went to look for a second grade teacher, I observed the class of the most highly recommended teacher at the school. Everyone raved about her. She was clearly uninterested in my daughter. She was curt when I was in her class, unwilling to attend any planning meeting, and if she saw me in the hallway would turn around and head the other way.

Obviously, that was not going to work.

The coordinator for her case at the school insisted we go look at the special education class. Ryan climbed up into my lap, curled into fetal position, and sucked her thumb the whole time we were there.

Obviously, that was not going to work.

That same coordinator, at the next meeting, would not put my concern/complaint about the school’s speech therapist into my daughter’s file. My daughter never hit a single IEP goal for speech; the therapist would not allow her to bring her school-paid-for-speech-device to speech. But complaints were not allowed to be put into the file.

Obviously, that was not going to work.

So we moved to private school. But the school changed and the enthusiasm for her weaned, so eventually we decided to homeschool.

Perhaps you are there, wondering what to do for your precious little person, asking if homeschool is the best available option.

I am a terrible homeschooler. I have moments of unbelievable glory, but incredible inconsistency. However, it is absolutely the very best thing for our family. We began in California and have continued in Texas. We did not sell our home in California for nearly two years, so we did not have the money I wanted for the therapies she needed. Additionally, in the two years since we moved, my mother in law passed away after a twenty year battle with dementia and my mother was diagnosed with A Typical Progressive Supranuclear Palsy.

My mom can no longer talk. She eats liquid food only. It is difficult and full of grief and anguish; and lots and lots of appointments. So there are HUGE things stacked against me in may quest to do a great job homeschooling.

But my daughter is cherished every day. She is not picking up behaviors I don’t like. We are learning–step by step. We have made progress and are ready for what will be our best year ever.

If you are wondering, YOU CAN DO THIS. Let me give you my recommendations:

  • Meet Sarah MacKenzie. She is the author of Teaching From Rest and The Read Aloud Family. She has a podcast and blog called The Read Aloud Revival. Make your number one priority to fill your world with great stories.
  • Audible. Actually, there is probably a free way to get audio books, so look there. But add audiobooks to your day’s plan. We have recently begun this and I LOVE not having the IPad out in the car. Instead, we have great stories to listen to. Running errands or going to appointments has become a productive part of our days.
  • Five In A Row. Five in A Row is a curriculum centered around reading the same story 5 days in a row. There is incredible learning tied into each story including life skills, geography, writing, comprehension and social studies. It is wonderful. It is the easiest I have come across that helps us feel like we are doing a great job day after day.
  • Light Tables. Light tables offer an open ended activity that encourages exploring and creativity. I have LOVED our activities and intend to build on that this year.
  • Play games. We play Yahtzee, go fish, and Whack-A-Mole. I am hoping to promote quick thinking and math skills. We are struggling in math.

If you add to the repertoire art and music and field trips, you will feel good about your child’s education. We have the 5 In A Row cookbook, so we will add cleaning up and cooking to the day.

Once I understood that sitting at the table for two hours each day makes all the difference in the world, things worked smoothly. Not two hours in a row–we break it up with walks, or giving her books to retreat for quiet reading time, or chores–but two hours at a table makes an incredible home school day.

It is so much less stressful than watching the system fail her..

When You’ve Had Enough

When You’ve Had Enough

I slipped in the back door and left a dixie cup of liquid pain reliever by the kitchen sink.

Yesterday, for the first time in a long time, my mom was able to swallow all her pills.

Today, she had an angry headache.

Progressive Supranuclear Palsy is a terrible, debilitating disease. To the average person, it looks a lot like ALS. In a spinning room, wiping away her tears, she was once given the Lou Gehrig’s Disease diagnosis. Then, months later, given it again—almost. (“You don’t have ALS yet,” the neurologist declared.) 

My mom’s first symptom, slurring her words, began about nine years ago.

Today she can not speak. She has an incredibly difficult time swallowing. She “eats” smoothies and soups, over the sink, using one hand to hold her jaw closed. The other hand, which has nearly no function, claws plastic IKEA cups and throws the food into her mouth; then she focuses and swallows the best she can.

It is brutally difficult. She is gigantically courageous.

The process is hard and messy—she spills a lot. Remarkably, she has maintained her weight for coming on two years and we have had no bouts on pneumonia. 

Pneumonia is our biggest threat.

I take that back. Pneumonia is our second biggest threat; discouragement is the first.

When you are given first an incorrect diagnosis (ALS) then a likely correct diagnosis (A-Typical PSP) that shares one thing in common—a lack of any medical help available—you begin a journey of willingness to try anything. In these last years, we have done yoga, acupuncture, cryotherapy, red light therapy, essential oils, ozone and UV therapy, IV vitamin cocktails, stem cells, crazy patches that supposedly activate your body, a massive list of supplements and CBD Oil.

The fact that I have resorted to CBD oil shows the level of ANYTHINGNESS I am willing to go to. I hate marijuana.

I hate it.

And, yes, I can tell you the difference between CBD and THC. I know the benefits of hemp and the long history of its uses in this country dating back to Mt. Vernon. I know about the endocannabinoid system. 

But I still hate marijuana and every attempt to normalize it in society. 

I have walked a long road and crossed a bridge on this topic and, as it turns out, I want help for my mom more than I hate all things Cannabis related, so in an attempt to help her conquer the (lack of) sleep beast that is haunting her, I patch her with crazy patches, drop CBD oil under her tongue, massage her swollen hand, put drops in her dry eyes and tuck her in—praying that she might rest. “The patches are just a placebo!” Critics say with rage.

Let me be clear, at this stage in the journey a placebo effect that makes things feel better is welcome 100% of the time. (I was kicked out of that Facebook group.) After a few days of using the patches, she could swallow pills again.

That might not last, but it did happen.

We have not found any miracle cure, and while daily life is not anything anyone would actually choose, most people don’t survive the disease as long as she has. And most people, after this long of a battle, are in wheelchairs or have significant cognitive impairment. My mom has no cognitive decline and has never fallen.

In other online groups of people associated with the disease, I am questioned, “Are you sure your mom has PSP?” Because nine years of symptoms later, she can still drive and walk and think. Something we are doing might be doing something to keep the full measure of the disease away. So I keep pounding on the internet and swiping my Dad’s credit card to find help.

And I keep my head in my Bible, steady in the knowledge that THIS IS THE DAY THE LORD HATH MADE.  THE MESSAGE version of the Bible is my best friend as of late. Today I am clinging to His words in Proverbs 1:

These are the wise sayings of Solomon, David’s son. Israel’s king—Written down so we will know how to live well and right, to understand what life means and where it’s going.

I don’t have to understand or even like much of this life. I know where it is going for all who believe, and that is enough for me. I fail regularly at living well and living right—but that is not a surprise to God.

The surprise to me is that EVEN THOUGH GOD KNOWS EVERY SINGLE FAILURE OF MINE, He still loves me. And He loves my mom. 

That is enough. 

The ENOUGH of this life can weigh. Me. down. Over and over in my prayer journal I have typed the words, “Lord, I need to know that I will be okay in YOU if ________________ happens.” I am learning, slowly, to release the things that scare me most. The words from Psalm 18 encourage to keep going, and to encourage my mom to keep going:

God made my life complete when I placed the pieces before Him. When I got my act together, He gave me a fresh start. Now I’m alert to God’s ways; I don’t take God for granted. Every day I review the ways He works; I try not to miss a trick. I feel put back together.

And THAT is enough.

Four Somethings

Hi!

My online friend, Heather, hosts a monthly link up for bloggers called FOUR SOMETHINGS. It is designed to connect and encourage around four things: Something Loved, Something Said, Something Learned and Something Read. Many, many times I have vowed to do this regularly and almost every time I have failed.

This fall has been a whirlwind of incredible high and lows. I suspect the winter will bring more of the same, but it is moving me to beg God for consistency in my emotions, regardless of the cyclone of events in my life . As I grow in my ability to do that, I know that my life reaps rewards.

Part of growing in that consistency involves actually doing more things I intend to do. Pushing past intentions is valuable, so I am starting right here!

 

SOMETHING LOVED

I love turkey. I love the smell of my home as it bakes in the oven. I love how the juice from the Italian sausage in the stuffing bastes the meat, making it tender and flavorful. I love the table full of food and people. It is the way I want my life to feel more often.

SOMETHING SAID

No question my favorite words said were, “I did the dishes.”

It made me love my hubby even more.

A helping hand is a gift from God.

And my heart needs and craves order over chaos these days.

This is new for me. I am an exceedingly flexible person who has been able to engage and function in total disarray for most of my life. Lately, however, I have noticed that mess and disorder (in the environment or the calendar) reduce my productivity significantly. I am not terribly fond of this new reality, but it made my hubby’s words on Thanksgiving Day all the sweeter.

SOMETHING LEARNED

I learned I am not in control of the universe.

This may not be the first time I have learned this detail. I am also reminded that the God who actually does run the universe is not necessarily motivated by my spectacular ideas.

If I was in charge, things would be much, much different than they are.

But they are not, and so I am wrestling hard with the way things actually are–except for those things I am in denial about. Those I will wrestle with later, because denial can only work for so long. This season for so many people I love has been FULL of really hard things: depression, violence, betrayal and loneliness. There have been many, many powerless moments where the only thing I could think to do was to repeat the following prayer over and over and over again:

Lord,

Fill ________________________ with YOUR peace, YOUR comfort, YOUR joy and YOUR love. Give them wisdom.

AMEN

I have prayed that for myself and others hundred of times these last several weeks, and it has been a balm to my spirit. I repeat it until I physically feel the stress in my body start to dissipate. I have said it in the half-asleep moments in the dark of night when I am rolling over and remembering hurts. I have counted it grace to lean into God, and found myself grateful He, not me, is in charge.

I (re)learned that sometimes I have to remind myself of God’s goodness, because the world run amok will do everything in its power to steal my joy…

SOMETHING READ

There is only one thing that has filled my head and that is Lysa Terkeurst’s book It’s Not Supposed To Be This Way. Sometimes it feels like she follows me around and speaks directly into my life…this book was written in the darkness coming into the light of a cancer diagnosis and reeling from infidelity of her marriage. I just love her words and her work.

I have friends living devastating stories right now, and she reminds us all that the story is not over.

I often say God sees the whole thing, while I am living in this minute. It’s hard to walk that out some days…

So there we are. Four things and looking forward to four more next month…THANKS Heather!

Four Somethings…

My online friend, Heather Gerwing, hosts a monthly link up “Four Somethings” for bloggers to connect and reflect. Every month I am CERTAIN I will think, ponder, write and join.

Then the time passes and I don’t.

But today, I think I will. Today is my mom’s 79th birthday. The morning breeze is flapping the American flag on my porch. The wind chime is singing to me. My husband woke before the sun to take my mom flying in his airplane as a birthday celebration.

Here he is with our daughter and his plane…two of his very favorite things.

It is a good day to be grateful.

SOMETHING LOVED

This summer I have loved taking our jet skiis out on the lakes. This is our first full summer in East Texas–we arrived mid-summer last year–and the simplicity of having this readily available has been delightful. In California the lakes were far away, and it when you add the gas money, the cost of getting into the lake, and the time required we just did not spend much time as a family on the water.

This summer that totally changed.

It is 32 minutes from our driveway to being in the water. It is a $3 fee that we put in an envelope in a box by the ramp. SIMPLE. Affordable.

I love it.

SOMETHING SAID

Because this is the season I am living, and because this is my mom’s birthday, I am going to quote something my mom said in a text to my sister in law, thanking her for birthday flowers:

Thank you so very much. I’m 79 tomorrow! I’m so happy to make it this far; there were times, this past year, when I was unsure I would/could.

The gastroenterologist said this morning that I looked robust and healthy, and I did not look like I needed a feeding tube!

I don’t want anybody else’s life. I am happy and grateful to be living my own.

SOMETHING LEARNED

Building upon the quote from my mom, the most profound thing I have (re)learned is this: We are capable of learning new normals.

My mom, who reigned for decades as the Queen of Oversharing and who could talk the paint off a wall, can no longer talk. She cannot eat regular food or smile on command.

Something is going terribly wrong between her brain and her muscles. It could be her brain; it could be her nerves. What feels like a billion tests, ordered by a thousand doctors, in endless hospitals and offices, has resulted in several diagnoses she does not have.

We don’t actually know what she has, but her hands and her mouth don’t do what we want them to do.

We have been told it is ALS. We have been told it is not.

We have been told it is Progressive Bulbar Palsy. We have been told it is not.

We have been told by many people in several states that there is nothing that can be done.

That is our new normal.

And we are making the best of it.

 

SOMETHING READ

For so long I have read mostly non-fiction, Bible Studies, medical and educational opinions and my sweet little brain struggles to follow stories…so the summer always inspires me to try to retrain my mind.

My first novel of the summer was one I picked up at Sam’s Club specifically because of the title: The Book Of Summer. I didn’t love it, but I finished it, so YAY me.

The next book I read (finally) because it had been on my shelf for a long, long time was Everybody’s Fool, by Richard Russo. That one I really enjoyed!

Finally, my favorite of the summer, was absolutely The Guernsey Literary and Potato Peel Pie Society, by Annie Barrows and Mary Ann Shaffer.

My sweet, precious mother in law passed away this summer. Her father, my husband’s grandfather, immigrated from Guernsey roughly 100 years ago. As a graduation gift to our teenage daughter, my husband took her to Europe. They went to Germany and Guernsey.

My daughter met her grandmother’s cousin who lived on Guernsey Island while it was occupied by the Germans in WW2. CAN YOU EVEN IMAGINE how grateful I am she had that experience?

As they were flying over the Atlantic, I was at Barnes & Noble buying the book. I had wanted to read it for a long time, and this moment seemed to good to pass up. The timing was perfect…I devoured the book and loved every page.

REFLECTIONS***** In many ways the summer of 2018 was the SUMMER OF SADNESS. There were beautiful moments. But there were some hard, hard things as well that I will write about at some point. But the pause this precious morning to reflect on four things is one I am grateful for…four…

When You’re Praying This Is Her Last Mother’s Day

When You’re Praying This Is Her Last Mother’s Day

Hallmark Days can be achingly saccharine.

Mother’s Day is just such an occasion…

 

I honestly can’t remember the first time she forgot.

I love my mother in law so much.

I don’t mean that in the ooey-gooey emotionally charged way of love, but in the time spent and efforts invested way.

I have held her hand in hospital beds and stayed up all night answering “Where am I? Who are you?” over and over again.

I have made her meals and loaded the walker in the car to go on outings time after time after time.

A few short months ago all her kids came to visit. We had a belated Christmas dinner together as a family.

We rented a wheelchair, bundled her up and took her to the zoo.

A few weeks later my little family took her out to dinner for her 88th birthday. As we were leaving a sweet stranger approached me and said, “You have a lot on your plate. Your family is doing a beautiful job.”

Kind words are so generous.

But the clock of dementia is not easy on an already addled brain. We are two decades into the journey of memory loss, and these last months find us in places I don’t want to be anymore.

She can no longer walk, so the adventures and outings are over.

The increasing holes in her thoughts are filled with fear and sadness. I have never known her to be anything but delightful…but now we have to medicate the screams and the tears.

Several weeks ago we took her to the ER for dehydration and a suspected UTI. Listening to her as she was getting catheterized ripped my heart out. I never want to hear to shriek in pain again.

It was time to acknowledge that Hospice was the biggest grace, and treating illnesses that we would have to do invasive tests to diagnose was no longer the best choice for her.

For years she had no memory but still enjoyed her days. My daughter has never known her as a grandmother who could remember who she was, but they love each other dearly.

Whether it’s because her brain is too far gone or her medications are too strong we don’t know, but sometimes she doesn’t even wake up to visit her. There are days when keeping her eyes open is so. much. work.

When she cries because she’s afraid of dying, we talk about heaven and how beautiful it is. On one particularly dark day, when looking at her made us wonder if she was going to make it through the night, my hubby asked her, “Mom, are you ready to go be with Jesus?”

“If He wants me,” she replied.

The celebration of a life well lived includes the willingness to let go at the end. And so, this Mother’s Day weekend, we are asking God for the strength to end well and the courage to allow her to do the same.

Not every Mother’s Day wish will go on a greeting card.

 

Sitting Down and Standing Up


Part of me is afraid to sit down at the keyboard and begin typing.

Afraid of oversharing.

Afraid of too much emotion.

Parenting a teenager in today’s world stirs vulnerability that is new and raw. I hate it.

Being a daughter to aging parents thrusted me into situations I never, ever wanted to be in.

Several times over this last year I sat down at a table (or in a room) thinking my life was one way, and stood up from the same table with everything changed.

These moments have defined my marriage, determined where I would live, involved a terminal diagnosis and altered relationships. I have stood up without saying a word, silent in a new resolution; I have declared “I won’t fight about this,” and walked away; I have repeated over and over “we will be okay”, not really believing the words as I spoke them.

I am constantly reminding myself of this truth: God sees the whole story while I am living in this minute. My perspective is not His, and I have to choose whether to trust Him or trust me. I am remarkably untrustworthy.

I sit down attempting to soak in His word and stand up desperate to believe Him.

  • Train up a child in the way he should go, and when he is old he will not depart from it. Proverbs 22:6
  • “I know the plans I have for you,” declares the Lord, “Plans for welfare and not calamity to give you a future and a hope.” Jeremiah 29:11
  • And not only this, but we also exult in our tribulations, knowing that tribulation builds perseverance; and perseverance, proven character; and proven character, hope. Romans 5:3-4

Hope.

 

 

More and more I am convinced that the actual miracle I need is not necessarily the thing I am praying for, but the courage to believe in God’s goodness no matter what happens.

That is where the hope will come.

One foot in front of the other, I will go through my day remembering to do the things I know bring wisdom. I will pray. I will read my Bible. I will look for the good and praise it.

I will sit down and seek Him and stand up choosing to believe Him.

I will do the same thing again tomorrow.

In that, I will find the hope I desperately seek.